![\"Erdheim-Chester](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2023\/01\/egle_kvedaraite-scaled.jpg\")
<\/a><\/figure>Erdheim-Chester Disease Global Alliance Awards $50k Grant to Study ECD<\/h2><\/div><\/div>A new study will help better understand disease-causing cells within ECD.<\/div><\/article>![\"2021](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/06\/Pegoraro-research-announcement-.png\")
<\/a><\/figure>2021 ECD Research Grant Award Announcement<\/h2><\/div><\/div>The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.<\/div><\/article>![\"Uplifting](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Untitled-design-51.png\")
<\/a><\/figure>Uplifting Athletes Awards ECD Global Alliance Investigator Draft<\/h2><\/div><\/div>A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.<\/div><\/article>![\"New](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Untitled-design-52.png\")
<\/a><\/figure>New ECD Care Center Welcomed in Gainesville Florida<\/h2><\/div><\/div>The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.<\/div><\/article>![\"Second](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Untitled-design-15.png\")
<\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div><\/div>The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article>![\"First](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Untitled-design-16.png\")
<\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article>![\"ECDGA](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Untitled-design-46.png\")
<\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article>![\"New](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/10\/eclinm.jpg\")
<\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article>![\"Education](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/10\/1-1.png\")
<\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article>![\"ECD](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/09\/Copy-of-blog-posts.png\")
<\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs![\"ATT](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2014\/11\/ATT-G-Blog-Icon.jpg\")
<\/a><\/h3>\r\n
A new study will help better understand disease-causing cells within ECD.<\/div><\/article><\/a><\/figure>2021 ECD Research Grant Award Announcement<\/h2><\/div>
<\/a><\/figure>2021 ECD Research Grant Award Announcement<\/h2><\/div><\/div>The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.<\/div><\/article><\/a><\/figure>Uplifting Athletes Awards ECD Global Alliance Investigator Draft<\/h2><\/div><\/div>A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.<\/div><\/article><\/a><\/figure>New ECD Care Center Welcomed in Gainesville Florida<\/h2><\/div><\/div>The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.<\/div><\/article><\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div><\/div>The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article><\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.<\/div><\/article><\/a><\/figure>Uplifting Athletes Awards ECD Global Alliance Investigator Draft<\/h2><\/div>
<\/a><\/figure>Uplifting Athletes Awards ECD Global Alliance Investigator Draft<\/h2><\/div><\/div>A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.<\/div><\/article><\/a><\/figure>New ECD Care Center Welcomed in Gainesville Florida<\/h2><\/div><\/div>The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.<\/div><\/article><\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div><\/div>The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article><\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.<\/div><\/article><\/a><\/figure>New ECD Care Center Welcomed in Gainesville Florida<\/h2><\/div>
<\/a><\/figure>New ECD Care Center Welcomed in Gainesville Florida<\/h2><\/div><\/div>The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.<\/div><\/article><\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div><\/div>The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article><\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.<\/div><\/article><\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div>
<\/a><\/figure>Second ECD Center for Floridians<\/h2><\/div><\/div>The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article><\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!<\/div><\/article><\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div>
<\/a><\/figure>First ECD Care Center Opens in Spain<\/h2><\/div><\/div>Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!<\/div><\/article><\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div>
<\/a><\/figure>ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease<\/h2><\/div><\/div>Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.<\/div><\/article><\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div>
<\/a><\/figure>New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients<\/h2><\/div><\/div>A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
A new paper published in Lancet\u00a0eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD).\r\n\r\nThe paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global Alliance (ECDGA), and was co-authored by Dr. Eli L. Diamond and Hannah-Rose Mitchell, Ph.D., MPH of Memorial Sloan Kettering Cancer Center.\r\n\r\nChallenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms, surveyed caregivers of patients with ECD and other histiocytic neoplasms (HN).\r\n\r\nThe survey focused on questions surrounding caregivers\u2019 overall met and unmet needs, family support, access to information, and their ability to find a sense of meaning in their care.\r\n\r\nIt has long been established that caregivers of more common cancers have been able to derive an important sense of meaning from their work, but this is the first paper to examine \u201cmeaning making\u201d with rare diseases, such as ECD.\r\n\r\nThe paper ultimately found that 78% of caregivers of patients with ECD and other HN reported moderate to severe unmet needs in both the information available regarding the diseases and the psychological impacts of day-to-day care. This includes dealing with anxiety, the longer duration of patient illness, family conflict, and generally a lower level of social support amongst friends and colleagues.\r\n\r\nThe unmet informational and physical support appears to be linked to the rarity of the disease and impacts an individual\u2019s ability to derive meaning and benefit from their role as a caregiver.\r\n\r\nFrom the paper:\r\n\r\n\u201cRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving.\u201d\r\n\r\nThe outcomes of the paper will help guide healthcare professionals and support organizations, such as the ECDGA, in finding new ways to fill the support gaps for caregivers and offer them more opportunities to find the benefit and meaning in their care. \r\n\r\n\u201cWhile the outcomes in the paper can feel disheartening, you cannot truly address a problem until you realize the extent of it,\u201d said Jessica Corkran, ECDGA Executive Director. \u201cWe hope this paper will cast a light on the struggles of caregivers of those with rare diseases and we will continue to expand our services and programs in order to support those in need. The ECDGA would especially like to thank those families who took the time to assist with the paper and complete the survey.\u201d\r\n\r\nFor those who wish to learn more about the study and the caregiver experience, our collaborators at the American Cancer Institute and the Histiocytosis Association will be holding a webinar with Dr. Eli L. Diamond on November 29th. Registration is free for the intended audience of researchers, advocates, policy makers, and healthcare professionals that would like\u00a0to join us!\r\n\r\nRead the paper article here.\r\n\r\nFor more information on ECDGA Care Giver Support visit: https:\/\/www.erdheim-chester.org\/caregiver-carer\/<\/div><\/article><\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div>
<\/a><\/figure>Education & Support for ECD Patients Living in China<\/h2><\/div><\/div>The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.\r\n\r\nOn September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.\r\n\r\nDr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.\r\n\r\nOver the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.\r\n\r\n\u201cBringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,\u201d said Dr. Cao. \u201cBut also, to see that they\u2019re part of a community that supports and understands what each other are going through. I\u2019m proud to be a part of the ECD Global Alliance and support its mission.\u201d\r\n\r\nDr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.\r\n\r\nThese life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!<\/div><\/article><\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div>
<\/a><\/figure>ECD Ohio Regional Patient & Family Gathering<\/h2><\/div><\/div>Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div><\/div><\/div><\/div>No results found.<\/div><\/div><\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
Join us virtually on October 7, 2022!\r\nRegister for Online Attendance\r\n\r\n \r\n\r\nTimes are shown in Eastern U.S. Time.\r\n\r\n \r\n\r\n10:00 am - Dr. Robert Franklin\r\n\r\nWelcome to the University of Cincinnati!\r\nInformation will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.\r\n\r\n \r\n\r\n10:15 am - Dr. Nishant Gupta\u00a0\r\n\r\nHow To Best Integrate The ECD Clinic Network In Your Care\r\nDue to the complexity of the disease, ECD patients are often required to meet with multiple specialists to manage and monitor their care. Dr. Nishant Gupta will help us simplify this process to help patients keep their various care teams in sync with one another and their care.\r\n\r\n \r\n\r\n10:45 am -\u00a0 Dr. Gaurav Goyal\r\n\r\nErdheim-Chester disease: Have we figured it all out?\r\nAn overview of ECD, including the history and its status will be shared.\u00a0 Additional topics include the clinical aspects of the disease, current treatments used, and monitoring practices.\r\n\r\n \r\n\r\n11:15 am - Dr. Robert Franklin\r\n\r\nManaging MEK Targeted Therapies\r\nLearn about the MEK-Inhibitors used to treat ECD. Topics will include the most common side effects and ways to manage them, monitoring and dosage recommendations, and the financial burdens associated.\r\n\r\n \r\n\r\n11:45 am - Dr. Ashish Kumar\r\n\r\nHow Do Inhibitors Work?!\r\nDr. Kumar will be breaking down inhibitors used in Erdheim-Chester disease, how they slow the progression of the disease, and the process physicians use to prescribe the best medication for each patient.\r\n\r\n \r\n\r\n12:15 pm - Closing and Evaluations\u00a0\r\n\r\nThank you for joining us! Please complete the survey at the end of your session to help us improve!\u00a0<\/div><\/article><\/div>
<\/div><\/div>
<\/div>
No results found.<\/div><\/div>
<\/div><\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div><\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Staying Connected<\/h2>\r\n
Staying Connected<\/h2>\r\nPatient Blogs<\/a><\/h3>\r\n
<\/a><\/h3>\r\n![\"132](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/11\/132-x-320.png\")
<\/a>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-87","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/87","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=87"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/87\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=87"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}