![\"The](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Post-4-90000-edited-fund.png\")
<\/a><\/figure>The Match Opportunity<\/h2><\/div>Your generosity can reach further this year-end.<\/p>\n
Donations to ECDGA\u2019s Year-End Campaign will be matched up to a total of $90,000, supporting research, education, awareness, and patient support.<\/p>\n
Behind every gift is an opportunity to help someone facing the uncertainty of a rare disease.<\/p>\n
Donate at fundecd.org<\/a>. Please share this opportunity with others.<\/p>\n<\/div><\/article>![\"ECDGA:](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Help-our-families-find-answers.png\")
<\/a><\/figure>ECDGA: A diagnosis is only the beginning of the questions<\/h2><\/div>Dear Friend,<\/p>\n
\u201cWhere do we go from here?\u201d<\/p>\n
For a family facing Erdheim-Chester Disease, receiving a diagnosis can bring that question into focus.<\/p>\n
They may need help finding an experienced physician, understanding unfamiliar terms, or connecting with someone who knows life with ECD.<\/p>\n
Your generosity helps the Erdheim-Chester Disease Global Alliance keep information and connections available when families need guidance.<\/p>\n
Please make a year-end gift to help another family take their next step.<\/strong> Donations will be matched up to a campaign total of $90,000.<\/p>\nHelp our families find answers<\/strong><\/a><\/p>\nThank you,
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article>![\"After](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Website-and-Email-2-graphic-edited.png\")
<\/a><\/figure>After an ECD Diagnosis the Questions Continue<\/h2><\/div>Your support helps patients and caregivers find information and connections as they consider their next steps.<\/em><\/p>\nReceiving an Erdheim-Chester Disease diagnosis gives a name to what someone has been experiencing. It can also bring a new set of questions.<\/p>\n
Where can we find a physician who knows ECD? How can we learn about treatment? What should we ask at the next appointment? Who understands what our family is facing?<\/p>\n
For patients and caregivers, reliable information can provide a starting point. Learning about available resources can help them organize their questions and prepare for conversations with their healthcare teams. Connecting with others can offer a place to share experiences without having to explain every unfamiliar term.<\/p>\n
The Erdheim-Chester Disease Global Alliance helps families find information, learn about experienced care, and connect with a community that understands. These connections support families as they navigate decisions with their treating clinicians.<\/p>\n
Your generosity helps keep that work available. A year-end gift supports research, education, awareness, and patient support, carrying forward the commitment that helped bring this community together.<\/p>\n
Our Help Our Families Find Answers campaign includes matching funds up to a total of $90,000. Please consider a gift to help another family take their next step.<\/p>\n
Donate at fundecd.org<\/a>. You can also help by sharing this article so more families know where to turn.<\/p>\n<\/div><\/article>![\"After](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Post-3-fund-edited.png\")
<\/a><\/figure>After the Diagnosis<\/h2><\/div>A diagnosis gives a disease a name. It does not answer every question.<\/p>\n
Where can I find experienced care? How can I learn about treatment? Who understands what my family is facing?<\/p>\n
Your generosity helps ECDGA connect patients and caregivers with information, resources, and one another.<\/p>\n
Support their next step at www.fundecd.org<\/a><\/p>\n<\/div><\/article>![\"Where](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Post-2-fundecd-edited.png\")
<\/a><\/figure>Where our story began<\/h2><\/div>Kathy Brewer learned that her husband, Gary, had Erdheim-Chester Disease only after his death. She could not change his experience, but she helped create something that would support the families who followed.<\/p>\n
That commitment became part of ECDGA\u2019s foundation.<\/p>\n
Your year-end gift carries that commitment forward. Help the next family find answers: visit www.fundecd.org<\/a>.<\/p>\n<\/div><\/article>![\"Help](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Post-1-fund-ecd-edited.png\")
<\/a><\/figure>Help the Next Family Find Answers.<\/h2><\/div>An Erdheim-Chester Disease diagnosis brings questions no family should have to navigate alone. Your support helps ECDGA provide trusted information, connections to experienced care, and a community that understands.<\/p>\n
Our Year-End Campaign begins today, with donations matched up to a total of $90,000.<\/p>\n
Give at fundecd.org<\/a>. Please share and help us reach the next family.<\/p>\n<\/div><\/article>![\"One](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Website-Graphic-1-edited.png\")
<\/a><\/figure>One family\u2019s search for answers became a place to turn<\/h2><\/div>Dear Friend,<\/p>\n
Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n
For years, Gary\u2019s health declined without a diagnosis. Only an autopsy revealed Erdheim-Chester Disease.<\/p>\n
Kathy could not change what happened to Gary. She helped build something that would support the families who followed.<\/p>\n
In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a place where families could find information about a disease few people had heard of.<\/p>\n
That purpose continues through the Erdheim-Chester Disease Global Alliance.<\/p>\n
Your gift supports research, education, awareness, and patient support, helping families find information, knowledgeable care, and a community that understands.<\/p>\n
Our Year-End Campaign includes matching funds up to a total of $90,000.<\/strong><\/p>\nGive at fundecd.org<\/strong><\/a><\/p>\nHelp our families find answers.<\/p>\n
With gratitude,
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article><\/a><\/figure>One Family\u2019s Search for Answers Became a Community<\/h2><\/div>Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n
For years, Gary\u2019s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed Erdheim-Chester Disease. That answer could no longer help Gary, but Kathy\u2019s determination to help other families would become part of a continuing story.<\/p>\n
In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a website where families could find information about a disease few people had heard of. Those beginnings helped build the Erdheim-Chester Disease Global Alliance.<\/p>\n
Families needed more than a disease name. They needed help understanding what came next, finding knowledgeable care, and connecting with people who understood their questions.<\/p>\n
That purpose continues today. Our Year-End Campaign, Help Our Families Find Answers, invites you to support research, education, awareness, and patient support. Your generosity helps keep information and connections available for someone newly diagnosed, a caregiver seeking guidance, or a patient looking for a physician with ECD experience.<\/p>\n
Donations will be matched up to a campaign total of $90,000. Your gift helps carry forward the reason this community began: making sure families have somewhere to turn.<\/p>\n
Please give at fundecd.org<\/a> and share this story with someone who would like to help.<\/p>\n<\/div><\/article>![\"Erdheim-Chester](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Year-End-Giving-Matching-Gift-Appeal.png\")
<\/a><\/figure>Erdheim-Chester Disease Global Alliance End of Year Campaign 2026<\/h2><\/div>Dear Community Member<\/p>\n
You have been part of the Erdheim-Chester Disease Global Alliance\u2019s work to bring support, information, and hope to people affected by ECD. We remain grateful for your past generosity, and we are writing to invite you to join us again during our 2026 End of Year Campaign<\/strong>.<\/strong><\/p>\nYour donation will be matched dollar for dollar, up to a total of $90,000 in matching funds for the campaign.<\/strong> While matching funds remain available, a gift of $50 becomes $100, $100 becomes $200, and $250 becomes $500 to support the ECD community.<\/p>\nFor a person newly diagnosed with Erdheim-Chester disease, the diagnosis can bring difficult questions. Where can I find a physician who understands this disease? What information can I trust? How will my family manage what comes next?<\/p>\n
Caregivers face questions of their own as they help coordinate appointments, support a loved one, and adjust to changing responsibilities. Having somewhere to turn for information and connection can help patients and families take their next steps.<\/p>\n
Your renewed support can help ECDGA meet these needs while continuing to invest in research.<\/p>\n
Through the generosity of donors like you, ECDGA works to:<\/p>\n
\n- Support patients and families<\/strong> by helping them find resources and connect with the ECD community.<\/li>\n
- Provide education<\/strong> through trusted information, webinars, and opportunities to learn from knowledgeable medical professionals.<\/li>\n
- Raise awareness<\/strong> so more people recognize ECD and understand the challenges it presents.<\/li>\n
- Fund research<\/strong> aimed at improving understanding, diagnosis, and treatment of this rare disease.These efforts depend on people who choose to give. Your past contribution helped sustain this work, and a gift today can help carry it forward.We recognize that circumstances change and that you have many worthy causes to consider. Whether you are able to renew your previous gift or give a different amount, we would be grateful to welcome you back as a donor. Every contribution is appreciated.Will you renew your support with a year-end gift?<\/strong> With the campaign match, your donation can provide twice the funding for ECDGA\u2019s mission while matching funds remain available.You can make your gift online at www.erdheim-chester.org<\/a> by selecting Donate, or mail a check payable to ECD Global Alliance<\/strong> to:Erdheim-Chester Disease Global Alliance
\nP.O. Box 775
\nDeRidder, LA 70634Thank you for the generosity you have already shown and for considering this invitation to give again. Your continued involvement can help patients and families find support today while helping researchers pursue better answers for tomorrow.With gratitude,Erdheim-Chester Disease Global AllianceP.S. Help us make the most of $90,000 in matching funds. Your gift will be matched dollar for dollar while funds remain available, doubling its support for the ECD community.<\/strong><\/li>\n<\/ul>\n<\/div><\/article>![\"Research](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/10\/LOI-Graphic-edited.png\")
<\/a><\/figure>Research Funding Opportunity<\/h2><\/div>The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester Disease or related adult histiocytic disorders.<\/p>\n
International submissions are welcome. Letters of Intent are due November 28, 2026.<\/p>\n
View the guidelines and apply: See information HERE<\/strong><\/a><\/p>\n<\/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":4676,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"Want to view the page below in a different language?\r\n\r\n[wpml_language_selector_widget]\r\n\r\nRegister Here<\/a>\r\n\r\nANNUAL INTERNATIONAL MEDICAL SYMPOSIUM<\/strong>\r\n\r\nMay 26-28, 2025 | Barcelona, Spain<\/strong>\r\n\r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture1.jpg\")
<\/a>Medical professionals from around the world will gather in Barcelona May 26-28 to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease. We welcome you to join your professional colleagues to share and learn about new findings related to the science of ECD, the diagnostic details, and the care of those living with ECD. This is the only meeting where medical specialists from different fields join together to discuss ECD. We look forward to you joining in the discussions and hope you might find opportunities for collaboration.\r\n\r\nRegister Here<\/a>\r\n\r\nAbstract Submissions<\/strong>\r\n\r\nAbstracts related to ECD and\/or adult histiocytosis are being solicited for presentation at the Medical Symposium.\u00a0 Abstracts are being accepted<\/a> for oral and\/or poster presentation.\u00a0 This is a great opportunity to share your work and the work of your colleagues.\u00a0 Please let them know of the opportunity.\u00a0 Abstracts must be submitted no later than February 24, 2025.\r\n\r\nSubmit Abstract<\/a>\r\n\r\nSchedule of Events<\/strong>\r\n\r\nMonday, May 26, 2025 \u2013 Patient & Family Gathering.<\/u><\/strong>\r\n8 \u2013 8:30 am Registration & Continental Breakfast<\/strong>\r\nEnjoy a light breakfast with others and prepare for an informational day full of hope.<\/p>\r\n8:30 am \u2013 4:30 pm Patient & Family Gathering<\/strong>\r\nSpend the day learning more about ECD from medical professionals, patients, and others.<\/p>\r\n6 \u2013 8 pm Celebration Evening<\/strong>\r\nSpend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.<\/p>\r\nTuesday, May 27, 2025 \u2013 Medical Symposium.<\/u><\/strong>\r\n8 \u2013 8:30 am Registration & Continental Breakfast<\/strong>\r\nEnjoy a light breakfast with others and prepare for an informational day full of hope.<\/p>\r\n8:30 am \u2013 4:30 pm Medical Symposium<\/strong>\r\nSpend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities.<\/p>\r\n6:30 \u2013 8:30 pm Medical Reception<\/strong>\r\nSpend time relaxing and meeting with friends.<\/p>\r\nWednesday, May 28, 2025 \u2013 Care Center Meeting.<\/u><\/strong>\r\n\r\n8 \u2013 11 am Care Center Meeting<\/strong>\r\nDiscuss patient care and opportunities to work together to improve patient outcomes.\r\n\r\nWho attends?<\/strong>\r\n\r\nThe event is open to the entire ECD community of medical professionals. Please feel free to invite your colleagues.\r\n\r\nRegister Here<\/a>\r\n\r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture2.jpg\")
<\/a>Host<\/strong>\r\n\r\nXavier Solanich, MD, PhD is this year\u2019s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients, he attends to patients with other rare diseases such as Rosai-Dorfman, primary immunodeficiencies, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases, mainly systemic vasculitis, periaortitis \/ retroperitoneal fibrosis, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis, immune \/ ischemic optic neuritis, and orbital pseudotumor.\r\n\r\nDr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases, immunodeficiencies, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator, obtaining competitive public funding. As a result of his research, he is the author of several articles published in indexed scientific journals.\r\n\r\nAgenda<\/strong>\r\n\r\nA detailed agenda will be available before the conference.\r\n\r\nHotel<\/strong>\r\n\r\nA room block has been set up for the Patient & Family Gathering at \u2013\r\n\r\nThe Renaissance Barcelona Fira Hotel<\/a>\r\nPlaza Europa, 50-52, L'Hospitalet de Llobregat,\r\nBarcelona, Spain, 08902\r\n\r\nPlease make your reservations using the link below before the hotel deadline.\r\n\r\nBook your group rate for ECD Global Alliance Conference<\/strong><\/a>\r\n\r\nGroup Room Rate: Single: 240 Euro\/night; Double: 260 Euro\/night\r\nHotel reservation deadline: April 21, 2025\r\n\r\nTravel<\/strong>\r\n\r\nBarcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:\r\n\r\n \t- Subway<\/u>. Metro line L9 Sud connects the airport terminals T1 and T2 with the Renaissance Barcelona Fira Hotel. The hotel metro station is Europa Fira. The metro operates daily between 5 am and midnight.<\/li>\r\n \t
- Private Transfer.<\/u> The hotel website states that private transfer is available for 101 Eur (one way) on request.<\/li>\r\n<\/ul>\r\nScholarship Help<\/strong>\r\n\r\nWe have a limited number of scholarships available if a member of the ECD medical professional community would be unable to attend due to financial reasons. If a scholarship is needed, please contact the ECDGA at support@Erdheim-Chester.org<\/a> as early as possible. You will need to include your name, email address, position in the community (clinician, specialist, scientist, student, etc.), and a statement of your need. We will let everyone know what help we can provide by the end of February.\r\n\r\nAwareness Nomination Opportunity<\/strong>\r\n\r\nYou are encouraged to nominate leaders in the ECD community - https:\/\/ecdga.questionpro.com\/2025-ECDGA-Award-Nomination<\/a>. Submit a Mark Heaney Award nomination to honor the medical professional you believe has improved the lives of ECD patients by bringing awareness to ECD within the medical profession. Nominate anyone (patient, caregiver, medical professional, friend, etc.)who has volunteered their time to help improve the lives of all of those impacted by ECD. The award recipient will be announced at the ECD Celebration Evening on May 26.\r\n\r\nAttendee Experiences<\/strong>\r\n
\r\n\r\n\r\n\u201cECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.\u201d<\/em><\/strong>\r\n\r\n\u2013 Radiologist<\/em><\/strong><\/td>\r\n\u201cIt is my first ECDGA meeting and I really enjoyed it.\u201d<\/em><\/strong>\r\n\r\n\u2013 Basic Scientist<\/em><\/strong><\/td>\r\n\u201cThis is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.\u201d<\/em><\/strong>\r\n\r\n\u2013 Hematologist<\/em><\/strong><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4364","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/4364","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=4364"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/4364\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/4676"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=4364"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
Your generosity can reach further this year-end.<\/p>\n
Donations to ECDGA\u2019s Year-End Campaign will be matched up to a total of $90,000, supporting research, education, awareness, and patient support.<\/p>\n
Behind every gift is an opportunity to help someone facing the uncertainty of a rare disease.<\/p>\n
Donate at fundecd.org<\/a>. Please share this opportunity with others.<\/p>\n<\/div><\/article> Dear Friend,<\/p>\n \u201cWhere do we go from here?\u201d<\/p>\n For a family facing Erdheim-Chester Disease, receiving a diagnosis can bring that question into focus.<\/p>\n They may need help finding an experienced physician, understanding unfamiliar terms, or connecting with someone who knows life with ECD.<\/p>\n Your generosity helps the Erdheim-Chester Disease Global Alliance keep information and connections available when families need guidance.<\/p>\n Please make a year-end gift to help another family take their next step.<\/strong> Donations will be matched up to a campaign total of $90,000.<\/p>\n Help our families find answers<\/strong><\/a><\/p>\n Thank you, Your support helps patients and caregivers find information and connections as they consider their next steps.<\/em><\/p>\n Receiving an Erdheim-Chester Disease diagnosis gives a name to what someone has been experiencing. It can also bring a new set of questions.<\/p>\n Where can we find a physician who knows ECD? How can we learn about treatment? What should we ask at the next appointment? Who understands what our family is facing?<\/p>\n For patients and caregivers, reliable information can provide a starting point. Learning about available resources can help them organize their questions and prepare for conversations with their healthcare teams. Connecting with others can offer a place to share experiences without having to explain every unfamiliar term.<\/p>\n The Erdheim-Chester Disease Global Alliance helps families find information, learn about experienced care, and connect with a community that understands. These connections support families as they navigate decisions with their treating clinicians.<\/p>\n Your generosity helps keep that work available. A year-end gift supports research, education, awareness, and patient support, carrying forward the commitment that helped bring this community together.<\/p>\n Our Help Our Families Find Answers campaign includes matching funds up to a total of $90,000. Please consider a gift to help another family take their next step.<\/p>\n Donate at fundecd.org<\/a>. You can also help by sharing this article so more families know where to turn.<\/p>\n<\/div><\/article> A diagnosis gives a disease a name. It does not answer every question.<\/p>\n Where can I find experienced care? How can I learn about treatment? Who understands what my family is facing?<\/p>\n Your generosity helps ECDGA connect patients and caregivers with information, resources, and one another.<\/p>\n Support their next step at www.fundecd.org<\/a><\/p>\n<\/div><\/article> Kathy Brewer learned that her husband, Gary, had Erdheim-Chester Disease only after his death. She could not change his experience, but she helped create something that would support the families who followed.<\/p>\n That commitment became part of ECDGA\u2019s foundation.<\/p>\n Your year-end gift carries that commitment forward. Help the next family find answers: visit www.fundecd.org<\/a>.<\/p>\n<\/div><\/article> An Erdheim-Chester Disease diagnosis brings questions no family should have to navigate alone. Your support helps ECDGA provide trusted information, connections to experienced care, and a community that understands.<\/p>\n Our Year-End Campaign begins today, with donations matched up to a total of $90,000.<\/p>\n Give at fundecd.org<\/a>. Please share and help us reach the next family.<\/p>\n<\/div><\/article> Dear Friend,<\/p>\n Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n For years, Gary\u2019s health declined without a diagnosis. Only an autopsy revealed Erdheim-Chester Disease.<\/p>\n Kathy could not change what happened to Gary. She helped build something that would support the families who followed.<\/p>\n In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a place where families could find information about a disease few people had heard of.<\/p>\n That purpose continues through the Erdheim-Chester Disease Global Alliance.<\/p>\n Your gift supports research, education, awareness, and patient support, helping families find information, knowledgeable care, and a community that understands.<\/p>\n Our Year-End Campaign includes matching funds up to a total of $90,000.<\/strong><\/p>\n Give at fundecd.org<\/strong><\/a><\/p>\n Help our families find answers.<\/p>\n With gratitude, Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n For years, Gary\u2019s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed Erdheim-Chester Disease. That answer could no longer help Gary, but Kathy\u2019s determination to help other families would become part of a continuing story.<\/p>\n In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a website where families could find information about a disease few people had heard of. Those beginnings helped build the Erdheim-Chester Disease Global Alliance.<\/p>\n Families needed more than a disease name. They needed help understanding what came next, finding knowledgeable care, and connecting with people who understood their questions.<\/p>\n That purpose continues today. Our Year-End Campaign, Help Our Families Find Answers, invites you to support research, education, awareness, and patient support. Your generosity helps keep information and connections available for someone newly diagnosed, a caregiver seeking guidance, or a patient looking for a physician with ECD experience.<\/p>\n Donations will be matched up to a campaign total of $90,000. Your gift helps carry forward the reason this community began: making sure families have somewhere to turn.<\/p>\n Please give at fundecd.org<\/a> and share this story with someone who would like to help.<\/p>\n<\/div><\/article> Dear Community Member<\/p>\n You have been part of the Erdheim-Chester Disease Global Alliance\u2019s work to bring support, information, and hope to people affected by ECD. We remain grateful for your past generosity, and we are writing to invite you to join us again during our 2026 End of Year Campaign<\/strong>.<\/strong><\/p>\n Your donation will be matched dollar for dollar, up to a total of $90,000 in matching funds for the campaign.<\/strong> While matching funds remain available, a gift of $50 becomes $100, $100 becomes $200, and $250 becomes $500 to support the ECD community.<\/p>\n For a person newly diagnosed with Erdheim-Chester disease, the diagnosis can bring difficult questions. Where can I find a physician who understands this disease? What information can I trust? How will my family manage what comes next?<\/p>\n Caregivers face questions of their own as they help coordinate appointments, support a loved one, and adjust to changing responsibilities. Having somewhere to turn for information and connection can help patients and families take their next steps.<\/p>\n Your renewed support can help ECDGA meet these needs while continuing to invest in research.<\/p>\n Through the generosity of donors like you, ECDGA works to:<\/p>\n The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester Disease or related adult histiocytic disorders.<\/p>\n International submissions are welcome. Letters of Intent are due November 28, 2026.<\/p>\n View the guidelines and apply: See information HERE<\/strong><\/a><\/p>\n<\/div><\/article><\/div> 8 \u2013 8:30 am Registration & Continental Breakfast<\/strong>\r\nEnjoy a light breakfast with others and prepare for an informational day full of hope.<\/p>\r\n 8:30 am \u2013 4:30 pm Patient & Family Gathering<\/strong>\r\nSpend the day learning more about ECD from medical professionals, patients, and others.<\/p>\r\n 6 \u2013 8 pm Celebration Evening<\/strong>\r\nSpend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.<\/p>\r\nTuesday, May 27, 2025 \u2013 Medical Symposium.<\/u><\/strong>\r\n 8 \u2013 8:30 am Registration & Continental Breakfast<\/strong>\r\nEnjoy a light breakfast with others and prepare for an informational day full of hope.<\/p>\r\n 8:30 am \u2013 4:30 pm Medical Symposium<\/strong>\r\nSpend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities.<\/p>\r\n 6:30 \u2013 8:30 pm Medical Reception<\/strong>\r\nSpend time relaxing and meeting with friends.<\/p>\r\nWednesday, May 28, 2025 \u2013 Care Center Meeting.<\/u><\/strong>\r\n\r\n8 \u2013 11 am Care Center Meeting<\/strong>\r\nDiscuss patient care and opportunities to work together to improve patient outcomes.\r\n\r\nWho attends?<\/strong>\r\n\r\nThe event is open to the entire ECD community of medical professionals. Please feel free to invite your colleagues.\r\n\r\nRegister Here<\/a>\r\n\r\n<\/a><\/figure>ECDGA: A diagnosis is only the beginning of the questions<\/h2><\/div>
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article><\/a><\/figure>After an ECD Diagnosis the Questions Continue<\/h2><\/div>
<\/a><\/figure>After the Diagnosis<\/h2><\/div>
<\/a><\/figure>Where our story began<\/h2><\/div>
<\/a><\/figure>Help the Next Family Find Answers.<\/h2><\/div>
<\/a><\/figure>One family\u2019s search for answers became a place to turn<\/h2><\/div>
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article><\/a><\/figure>One Family\u2019s Search for Answers Became a Community<\/h2><\/div>
<\/a><\/figure>Erdheim-Chester Disease Global Alliance End of Year Campaign 2026<\/h2><\/div>
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\nP.O. Box 775
\nDeRidder, LA 70634Thank you for the generosity you have already shown and for considering this invitation to give again. Your continued involvement can help patients and families find support today while helping researchers pursue better answers for tomorrow.With gratitude,Erdheim-Chester Disease Global AllianceP.S. Help us make the most of $90,000 in matching funds. Your gift will be matched dollar for dollar while funds remain available, doubling its support for the ECD community.<\/strong><\/li>\n<\/ul>\n<\/div><\/article><\/a><\/figure>Research Funding Opportunity<\/h2><\/div>
<\/a>Medical professionals from around the world will gather in Barcelona May 26-28 to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease. We welcome you to join your professional colleagues to share and learn about new findings related to the science of ECD, the diagnostic details, and the care of those living with ECD. This is the only meeting where medical specialists from different fields join together to discuss ECD. We look forward to you joining in the discussions and hope you might find opportunities for collaboration.\r\n\r\nRegister Here<\/a>\r\n\r\nAbstract Submissions<\/strong>\r\n\r\nAbstracts related to ECD and\/or adult histiocytosis are being solicited for presentation at the Medical Symposium.\u00a0 Abstracts are being accepted<\/a> for oral and\/or poster presentation.\u00a0 This is a great opportunity to share your work and the work of your colleagues.\u00a0 Please let them know of the opportunity.\u00a0 Abstracts must be submitted no later than February 24, 2025.\r\n\r\nSubmit Abstract<\/a>\r\n\r\nSchedule of Events<\/strong>\r\n\r\nMonday, May 26, 2025 \u2013 Patient & Family Gathering.<\/u><\/strong>\r\n<\/a>Host<\/strong>\r\n\r\nXavier Solanich, MD, PhD is this year\u2019s host of the ECD Meeting. Dr. Solanich is a medical specialist in internal medicine at the University Hospital of Bellvitge where he has practiced since August 2010. He leads the ECD Referral Care Center at Bellvitge and in addition to ECD patients, he attends to patients with other rare diseases such as Rosai-Dorfman, primary immunodeficiencies, and some hereditary metabolic diseases (especially Gaucher). He sees patients with systemic autoimmune diseases, mainly systemic vasculitis, periaortitis \/ retroperitoneal fibrosis, and IgG4-related diseases. He is also a consultant to the ophthalmology service for diagnosis and management of patients with uveitis, immune \/ ischemic optic neuritis, and orbital pseudotumor.\r\n\r\nDr. Solanich also works in the Systemic Diseases and Aging group at the Bellvitge Biomedical Research Institute (IDIBELL). He has participated in multiple national and international research projects to study systemic autoimmune diseases, immunodeficiencies, and other rare diseases. He has also participated in several clinical trials as principal investigator or collaborator, obtaining competitive public funding. As a result of his research, he is the author of several articles published in indexed scientific journals.\r\n\r\nAgenda<\/strong>\r\n\r\nA detailed agenda will be available before the conference.\r\n\r\nHotel<\/strong>\r\n\r\nA room block has been set up for the Patient & Family Gathering at \u2013\r\n\r\nThe Renaissance Barcelona Fira Hotel<\/a>\r\nPlaza Europa, 50-52, L'Hospitalet de Llobregat,\r\nBarcelona, Spain, 08902\r\n\r\nPlease make your reservations using the link below before the hotel deadline.\r\n\r\nBook your group rate for ECD Global Alliance Conference<\/strong><\/a>\r\n\r\nGroup Room Rate: Single: 240 Euro\/night; Double: 260 Euro\/night\r\nHotel reservation deadline: April 21, 2025\r\n\r\nTravel<\/strong>\r\n\r\nBarcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:\r\n\r\n \t
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\r\n \u201cECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.\u201d<\/em><\/strong>\r\n\r\n\u2013 Radiologist<\/em><\/strong><\/td>\r\n \u201cIt is my first ECDGA meeting and I really enjoyed it.\u201d<\/em><\/strong>\r\n\r\n\u2013 Basic Scientist<\/em><\/strong><\/td>\r\n \u201cThis is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.\u201d<\/em><\/strong>\r\n\r\n\u2013 Hematologist<\/em><\/strong><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4364","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/4364","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=4364"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/pages\/4364\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/4676"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=4364"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}