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X-ORIGINAL-URL:https://www.erdheim-chester.org
X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250625T100000
DTEND;TZID=America/Chicago:20250625T110000
DTSTAMP:20260604T150520
CREATED:20250519T065418Z
LAST-MODIFIED:20250614T010043Z
UID:10000046-1750845600-1750849200@www.erdheim-chester.org
SUMMARY:Canadian Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/canadian-community-chat-june-2025/
CATEGORIES:Canadian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Canadian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250624T180000
DTEND;TZID=America/Chicago:20250624T190000
DTSTAMP:20260604T150520
CREATED:20250519T064843Z
LAST-MODIFIED:20250614T010031Z
UID:10000045-1750788000-1750791600@www.erdheim-chester.org
SUMMARY:Grief Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/grief-community-chat-june-2025/
CATEGORIES:Grief Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Grief-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250624T130000
DTEND;TZID=America/Chicago:20250624T140000
DTSTAMP:20260604T150520
CREATED:20250519T064509Z
LAST-MODIFIED:20250614T001505Z
UID:10000044-1750770000-1750773600@www.erdheim-chester.org
SUMMARY:Peer-to-Peer Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/peer-to-peer-community-chat-june-2025/
CATEGORIES:Peer-to-Peer Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Peer-to-Peer-Chat-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250618
DTEND;VALUE=DATE:20250620
DTSTAMP:20260604T150520
CREATED:20250519T064134Z
LAST-MODIFIED:20250614T005348Z
UID:10000043-1750287600-1750373999@www.erdheim-chester.org
SUMMARY:Australian/New Zealand Community Chat
DESCRIPTION:Register Today \n10:00 AM to 11:00 AM Sydney\, Brisbane & Melbourne\n8:00 AM to 9:00 AM Perth \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat-june-2025/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Australia-NZ-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250615
DTEND;VALUE=DATE:20250716
DTSTAMP:20260604T150520
CREATED:20250606T152433Z
LAST-MODIFIED:20250617T142602Z
UID:10000367-1750028400-1752620399@www.erdheim-chester.org
SUMMARY:Get Ready to Run\, Walk & Roll for Hope! The 2025 Fun Run is Here!
DESCRIPTION:The Erdheim-Chester Disease Global Alliance (ECDGA) is thrilled to announce the 2025 Global Steps Towards Awareness & Hope Virtual Fun Run\, Walk & Roll! From June 16 through July 15\, 2025\, we invite YOU—patients\, caregivers\, supporters\, and advocates around the world—to join our united movement of strength\, visibility\, and hope. \nThis fully virtual event is your opportunity to raise awareness of Erdheim-Chester Disease (ECD)\, an ultra-rare and often misunderstood blood cancer that affects just over a thousand families globally. Whether you lace up your sneakers\, roll through your neighborhood\, or walk a trail with your team\, every step you take helps amplify our mission: awareness\, support\, education\, and research for those impacted by ECD. \n  \nOrder Yours Today! \nKey Event Details: \n\nEvent Dates: June 16 – July 15\, 2025\nRegistration: Opens June 1\, 2025 — $20 per person\nWhere: Anywhere in the world — it’s fully virtual\nT-shirts are available for purchase. Order Today!\nForm a team\, represent your state or country\, and walk with purpose\n\n  \nAll funds raised support our global mission and bring us closer to better outcomes and ultimately\, a cure. Let’s keep moving forward—together. \nRegister Today \nQuestions? Reach out to Renita.Page@erdheim-chester.org \nLet’s step forward with strength. Let’s roll with resilience. Let’s run with hope. \n[usahtml5map id=”0″] \n[worldcountrieshtml5map id=”0″] \nApproved version
URL:https://www.erdheim-chester.org/event/get-ready-to-run-walk-roll-for-hope-the-2025-fun-run-is-here/
CATEGORIES:Annual Fun Run,Featured
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Approved-version-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250610T180000
DTEND;TZID=America/Chicago:20250610T190000
DTSTAMP:20260604T150520
CREATED:20250519T063818Z
LAST-MODIFIED:20250614T002044Z
UID:10000042-1749578400-1749582000@www.erdheim-chester.org
SUMMARY:Caregiver Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/caregiver-community-chat-june-2025/
CATEGORIES:Caregiver Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250526T070000
DTEND;TZID=America/Chicago:20250528T100000
DTSTAMP:20260604T150520
CREATED:20250115T231711Z
LAST-MODIFIED:20251119T043711Z
UID:10000014-1748242800-1748426400@www.erdheim-chester.org
SUMMARY:10th Annual ECD Medical Symposium
DESCRIPTION:Register Here \nMedical 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. \n \nAbstract Submissions Abstracts related to ECD and/or adult histiocytosis are being solicited for presentation at the Medical Symposium.  Abstracts are being accepted for oral and/or poster presentation.  This is a great opportunity to share your work and the work of your colleagues.  Please let them know of the opportunity.  Abstracts must be submitted no later than February 24\, 2025. \nSubmit Abstract \nSchedule of Events Sunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass Anyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 – Patient & Family Gathering. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Patient & Family Gathering Spend the day learning more about ECD from medical professionals\, patients\, and others. \n6 – 8 pm Celebration Evening Spend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nTuesday\, May 27\, 2025 – Medical Symposium. \n8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am – 4:30 pm Medical Symposium Spend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities. \n6:30 – 8:30 pm Medical Reception Spend time relaxing and meeting with friends. \nWednesday\, May 28\, 2025 – Care Center Meeting. 8 – 11 am Care Center Meeting Discuss patient care and opportunities to work together to improve patient outcomes. Who attends? The event is open to the entire ECD community of medical professionals. Please feel free to invite your colleagues. \nRegister Here \nHost Xavier Solanich\, MD\, PhD is this year’s 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. Dr. 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. \nAgenda \nA detailed agenda will be available before the conference. Hotel A room block has been set up for the Patient & Family Gathering at – The Renaissance Barcelona Fira Hotel Plaza Europa\, 50-52\, L’Hospitalet de Llobregat\, Barcelona\, Spain\, 08902 Please make your reservations using the link below before the hotel deadline. Book your group rate for the ECD Global Alliance Conference Group Room Rate: Single: 240 Euro/night; Double: 260 Euro/night Hotel reservation deadline: April 21\, 2025 \nTravel Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. 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.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Eur (one way) on request.\n\nScholarship Help \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 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. \nAwareness Nomination Opportunity \nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. 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. \nAttendee Experiences \n“ECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.” \n– Radiologist \n“It is my first ECDGA meeting and I really enjoyed it.” \n– Basic Scientist \n“This is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.” \n– Hematologist
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-medical-symposium/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Medical Symposium
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-ms.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250526T070000
DTEND;TZID=America/Chicago:20250526T190000
DTSTAMP:20260604T150520
CREATED:20250526T221649Z
LAST-MODIFIED:20251119T044028Z
UID:10000013-1748242800-1748286000@www.erdheim-chester.org
SUMMARY:10th Annual ECD Patient & Family Gathering
DESCRIPTION:Register Here \nPart of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life. The purpose of a Patient and Family Gathering (PFG) is to unite patients and family members\, as well as increase their knowledge and understanding of Erdheim-Chester disease. \n \nThe PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field. The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options\, as well as hear about the latest research findings. \nRegister Here \nOverview\nThe ECD Global Alliance 2025 Patient & Family Gathering will take place at the Renaissance Barcelona Fira Hotel on May 26. This meeting will bring together patients\, family members\, carers\, clinicians\, researchers\, and members of support organizations to share knowledge and experiences related to ECD diagnosis\, treatment\, daily living. There will be time for learning\, time for sharing\, and time for connecting with others who have been affected by ECD. We hope it will be a time for all to become better informed and find increased hope for the future. \nOn-site simultaneous interpreters will enable participation for English\, French\, German\, Italian\, and Spanish speakers. \nSchedule of Events\nSunday\, May 25\, 2025 – Pre-Meeting Activity \n5 – 6 pm Catholic Mass\nAnyone interested is invited to a Catholic Mass before the beginning of the conference. Father Charles Balnaves\, the sponsor of the Patient & Family Gathering\, will celebrate the Mass. \nMonday\, May 26\, 2025 \n8:00 am-8:30 am Registration & Continental Breakfast\nEnjoy a light breakfast with others and prepare for an informational day full of hope. \n8:30 am-4:40 pm Patient & Family Gathering\nSpend the day learning more about ECD from medical professionals\, patients\, and others. \n6:00 pm-8:00 pm Celebration Evening\nSpend time with patients\, family members\, friends\, and medical professionals for an evening of hope and celebration. \nWho attends?\nThe event is open to the entire ECD community of patients\, carers\, family members\, and ECD medical professionals. Please feel free to invite your family\, friends\, and members of your medical team. \nRegister Here \nHost\nXavier Solanich\, MD\, PhD is this year’s 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… \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. \nAgenda\nA detailed agenda will be available before the conference. \nHotel\nA room block has been set up for the Patient & Family Gathering at – \nThe Renaissance Barcelona Fira Hotel\nPlaza Europa\, 50-52\, L’Hospitalet de Llobregat\,\nBarcelona\, Spain\, 08902 \nPlease make your reservations using the link below before the hotel deadline. \nBook your group rate for ECD Global Alliance Conference \nGroup Room Rate: Single: 240 Euro/night; Double: 260 Euro/night\nHotel reservation deadline: April 21\, 2025 \nTravel\nBarcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include: \n\nSubway. 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.\nPrivate Transfer. The hotel website states that private transfer is available for 101 Euro (one way) on request.\n\nScholarship Help\nWe have a limited number of scholarships available if a patient/family member would be unable to attend due to financial reasons. If a scholarship is needed\, please contact the ECDGA at support@Erdheim-Chester.org as early as possible. You will need to include your name\, email address\, position in the community (patient\, caregiver\, family member)\, and a statement of your need. We will let everyone know what help we can provide by the end of February. \nAwareness Nomination Opportunity\nYou are encouraged to nominate leaders in the ECD community – https://ecdga.questionpro.com/2025-ECDGA-Award-Nomination. 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. \nAttendee Experiences \n“We are all in the same boat\, and our journey will be better together.” \n– Susan Anderson\, ECD Family \n“I have been in health care for over 20 years and have never seen or experienced such a caring and devoted group of health care professionals and volunteers!” \n– ECD Patient in Attendance \n“I know they can’t give me a cure\, or even answer all of my questions\, but just knowing they are here for me\, and they are listening\, and they understand what I’m going through\, that’s what I needed.” \n– ECD Patient in Attendance
URL:https://www.erdheim-chester.org/event/10th-annual-ecd-patient-family-gathering/
LOCATION:The Renaissance Barcelona Fira Hotel\, Plaza Europa\, 50-52\, L'Hospitalet de Llobregat\, Barcelona\, 08902\, Spain
CATEGORIES:ECD Patient & Family Gathering
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/01/skyline-barcelona-pfg.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250513T190000
DTEND;TZID=America/Chicago:20250513T200000
DTSTAMP:20260604T150520
CREATED:20250427T171856Z
LAST-MODIFIED:20250614T002002Z
UID:10000037-1747162800-1747166400@www.erdheim-chester.org
SUMMARY:Caregiver Community Chat
DESCRIPTION:Register Today \nChats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues\, treatments\, tests\, knowledgeable doctors\, symptoms\, treatment side effects\, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other. \nPlease read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar. \nNOTE: Check your time zone here: Time Zone Converter. \nThere will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.
URL:https://www.erdheim-chester.org/event/caregiver-community-chat/
CATEGORIES:Caregiver Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Caregiver-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250505T110000
DTEND;TZID=America/Chicago:20250505T160000
DTSTAMP:20260604T150520
CREATED:20250427T173848Z
LAST-MODIFIED:20250614T001926Z
UID:10000036-1746442800-1746460800@www.erdheim-chester.org
SUMMARY:German Community Chat
DESCRIPTION:Date: May 5\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/german-community-chat/
CATEGORIES:German Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/German-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250502T120000
DTEND;TZID=America/Chicago:20250502T130000
DTSTAMP:20260604T150520
CREATED:20250826T113024Z
LAST-MODIFIED:20250909T150936Z
UID:10000583-1746187200-1746190800@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 1: Overview of Services
DESCRIPTION:Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-1-overview-of-services/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Leukemia-Lymphoma-Society.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250429T130000
DTEND;TZID=America/Chicago:20250429T160000
DTSTAMP:20260604T150520
CREATED:20250427T171538Z
LAST-MODIFIED:20250612T033512Z
UID:10000031-1745931600-1745942400@www.erdheim-chester.org
SUMMARY:Peer-to-Peer Community Live Chat with a University of Alabama Medical Student
DESCRIPTION:Date: Apr 29\, 2025\nTime: 02:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/peer-to-peer-community-live-chat-with-a-university-of-alabama-medical-student/
CATEGORIES:Peer-to-Peer Community Chats
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/Peer-to-peer-chat-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250426T100000
DTEND;TZID=America/Chicago:20250426T160000
DTSTAMP:20260604T150520
CREATED:20250427T172348Z
LAST-MODIFIED:20250614T001315Z
UID:10000033-1745661600-1745683200@www.erdheim-chester.org
SUMMARY:Spanish Community Chat
DESCRIPTION:Date: Apr 26\, 2025\nTime: 11:00 AM \nRegister Today
URL:https://www.erdheim-chester.org/event/spanish-community-chat/
CATEGORIES:Spanish Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Spanish-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250423T110000
DTEND;TZID=America/Chicago:20250423T160000
DTSTAMP:20260604T150520
CREATED:20250427T172214Z
LAST-MODIFIED:20250614T001011Z
UID:10000032-1745406000-1745424000@www.erdheim-chester.org
SUMMARY:Canadian Community Chat
DESCRIPTION:Date: Apr 23\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/canadian-community-chat/
CATEGORIES:Canadian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Canadian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250419T123000
DTEND;TZID=America/Chicago:20250419T133000
DTSTAMP:20260604T150520
CREATED:20250418T192848Z
LAST-MODIFIED:20250614T000835Z
UID:10000030-1745065800-1745069400@www.erdheim-chester.org
SUMMARY:Grief Community Chats Event 04/19/2025
DESCRIPTION:Date: 19 April\, 2025\nTime: 01:30 pm to 02:30 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/grief-community-chats-event-04-19-2025/
CATEGORIES:Grief Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Grief-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250416T190000
DTEND;TZID=America/Chicago:20250416T190000
DTSTAMP:20260604T150520
CREATED:20250427T173159Z
LAST-MODIFIED:20250614T000710Z
UID:10000038-1744830000-1744830000@www.erdheim-chester.org
SUMMARY:Australian/New Zealand Community Chat
DESCRIPTION:Date: Apr 16\, 2025\nTime: 08:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/australian-new-zealand-community-chat/
CATEGORIES:Australian and New Zealand Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Australia-NZ-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250415T110000
DTEND;TZID=America/Chicago:20250415T160000
DTSTAMP:20260604T150520
CREATED:20250427T172921Z
LAST-MODIFIED:20250614T000600Z
UID:10000034-1744714800-1744732800@www.erdheim-chester.org
SUMMARY:Italian Community Chat
DESCRIPTION:Date: Apr 15\, 2025\nTime: 12:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/italian-community-chat/
CATEGORIES:Italian Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/Italian-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250401T070000
DTEND;TZID=America/Chicago:20250401T160000
DTSTAMP:20260604T150520
CREATED:20250826T111525Z
LAST-MODIFIED:20250910T084446Z
UID:10000559-1743490800-1743523200@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 3: Clinical Trial Support Center
DESCRIPTION: \nThe Leukemia & Lymphoma Society offers a free service called the Clinical Trial Support Center (CTSC) to help blood cancer patients\, caregivers\, and healthcare professionals find potential clinical trials and overcome enrollment barriers. This webinar will discuss the process and support Erdheim-Chester patients.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-3-clinical-trial-support-center/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/The-Leukemia-Lymphoma-Society-Support-Series-Part-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250313T120000
DTEND;TZID=America/Chicago:20250313T130000
DTSTAMP:20260604T150520
CREATED:20250826T124738Z
LAST-MODIFIED:20250910T092359Z
UID:10000691-1741867200-1741870800@www.erdheim-chester.org
SUMMARY:Rosai Dorfman Disease
DESCRIPTION:Discover insights from a leading expert on Rosai-Dorfman Disease. Gain a deeper understanding of this rare condition\, its symptoms\, diagnosis\, and the latest treatment options. Don’t miss out on expert knowledge that could make a difference!
URL:https://www.erdheim-chester.org/event/rosai-dorfman-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Rosai-Dorfman-Disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250307T140000
DTEND;TZID=America/Chicago:20250307T160000
DTSTAMP:20260604T150520
CREATED:20250427T173418Z
LAST-MODIFIED:20250614T000347Z
UID:10000035-1741356000-1741363200@www.erdheim-chester.org
SUMMARY:French Community Chat
DESCRIPTION:Date: March 7\, 2025\nTime: 03:00 pm \nRegister Today
URL:https://www.erdheim-chester.org/event/french-community-chat/
CATEGORIES:French Community Chats
ATTACH;FMTTYPE=image/jpeg:https://www.erdheim-chester.org/wp-content/uploads/2025/06/French-Chat.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250225T120000
DTEND;TZID=America/Chicago:20250225T130000
DTSTAMP:20260604T150520
CREATED:20250826T112000Z
LAST-MODIFIED:20250910T083240Z
UID:10000571-1740484800-1740488400@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 2: Information Resource Center
DESCRIPTION:Information Specialists offer free\, one-on-one education\, psychosocial support\, and advocacy for blood cancer patients\, caregivers\, and families. They cover disease and treatment options\, clinical trials\, mental health support\, and treatment team communication.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-2-information-resource-center/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/The-Leukemia-Lymphoma-Society-Support-Series-Part-2-Information-Resource-Center.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T150520
CREATED:20250826T124624Z
LAST-MODIFIED:20250910T091948Z
UID:10000679-1737633600-1737637200@www.erdheim-chester.org
SUMMARY:Caring for yourself through the holidays
DESCRIPTION:Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.
URL:https://www.erdheim-chester.org/event/caring-for-yourself-through-the-holidays/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Caring-for-yourself-through-the-holidays.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T150520
CREATED:20250826T124500Z
LAST-MODIFIED:20250910T091548Z
UID:10000667-1737633600-1737637200@www.erdheim-chester.org
SUMMARY:Coping Strategies for Depression & Anxiety
DESCRIPTION:Listen to Kevin O’Brien\, NP\, and Josef Lacy discussing mental health challenges and effective techniques for overcoming them. Gain insights firsthand from an ECD patient who shares his inspiring journey triumphing over mental health issues.
URL:https://www.erdheim-chester.org/event/coping-strategies-for-depression-anxiety/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Coping-Strategies-for-Depression-Anxiety.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241123T120000
DTEND;TZID=America/Chicago:20241123T130000
DTSTAMP:20260604T150520
CREATED:20250826T124355Z
LAST-MODIFIED:20250910T091106Z
UID:10000655-1732363200-1732366800@www.erdheim-chester.org
SUMMARY:Dr. Girschikofsky- erklärt Patienten und Familien ECD auf Deutsch
DESCRIPTION:Dr. Michael Girschikofsky from the Elisabethinen Hospital Linz explains ECD to German-speaking ECD patients and families.
URL:https://www.erdheim-chester.org/event/dr-girschikofsky-erklart-patienten-und-familien-ecd-auf-deutsch/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Dr.-Girschikofsky-erklart-Patienten-und-Familien-ECD-auf-Deutsch.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220921T120000
DTEND;TZID=America/Chicago:20220921T120000
DTSTAMP:20260604T150520
CREATED:20250826T124245Z
LAST-MODIFIED:20250910T090609Z
UID:10000643-1663761600-1663761600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Navigating Clinical Trials for Histiocytosis
DESCRIPTION:Taking part in a clinical trial can have many benefits for the patient and the community. We hope this session will help you better understand clinical trials\, how to talk to your doctor about trials\, and leave you feeling prepared with the right resources.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-navigating-clinical-trials-for-histiocytosis/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Navigating-Clinical-Trials-for-Histiocytosis.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220815T120000
DTEND;TZID=America/Chicago:20220815T130000
DTSTAMP:20260604T150520
CREATED:20250826T124140Z
LAST-MODIFIED:20250910T140206Z
UID:10000631-1660564800-1660568400@www.erdheim-chester.org
SUMMARY:Erdheim-Chester Disease Targeted Therapies: The good and the bad
DESCRIPTION:Watch webinar on youtube \nLearn about the treatments used to treat Erdheim-Chester disease (ECD)\, what to expect over time and the side effects that may be involved. Ginny-Tyler Meadows is a clinical pharmacist serving the hematology/oncology clinics at The Kirklin Clinic at the University of Alabama at Birmingham Hospital. She specifically assists patients with prescribed oral oncolytic therapies. She is passionate about patient education and advocacy in addition to increasing patient access to medications.
URL:https://www.erdheim-chester.org/event/erdheim-chester-disease-targeted-therapies-the-good-and-the-bad/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Erdheim-Chester-Disease-Targeted-Therapies-The-good-and-the-bad.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220519T120000
DTEND;TZID=America/Chicago:20220519T130000
DTSTAMP:20260604T150520
CREATED:20250826T124011Z
LAST-MODIFIED:20250910T085946Z
UID:10000619-1652961600-1652965200@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Moving Through Rare Disease
DESCRIPTION:Tim Facciola\, Certified Personal Trainer & Movement Specialist\, joins us in a conversation about incorporating movement and exercise into life when managing a chronic illness or a rare disease\, such as Erdheim-Chester Disease.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-moving-through-rare-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Moving-Through-Rare-Disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220505T120000
DTEND;TZID=America/Chicago:20220505T130000
DTSTAMP:20260604T150520
CREATED:20250826T123859Z
LAST-MODIFIED:20250910T084050Z
UID:10000607-1651752000-1651755600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit - Part Two: Functional Nutrition & Wellness
DESCRIPTION:The ECD Global Alliance (ECDGA) and the Histiocytosis Association co-host Beyond the Office Visit virtual education series\, Part Two: Functional Nutrition & Wellness. During this session\, Certified Health Coach and Certified Functional Nutrition Practitioner\, Alyssa Cabral\, explained the role of functional wellness and nutrition when living with or caring for someone with histiocytosis or any rare/chronic condition.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-part-two-functional-nutrition-wellness/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Part-Two-Functional-Nutrition-Wellness.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220301T120000
DTEND;TZID=America/Chicago:20220301T130000
DTSTAMP:20260604T150520
CREATED:20250826T124939Z
LAST-MODIFIED:20250910T135723Z
UID:10000703-1646136000-1646139600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Managing the Cost of Histio Care
DESCRIPTION:Watch webinar on youtube \nThis is the start of the Beyond the Office Visit virtual education series co-hosted with the Histiocytosis Association. Speakers Deandre Pate and Victoria Lassen from Memorial Sloan Kettering walk through ways to manage healthcare costs\, find local assistance\, and improve logistical burdens while living with a histiocytosis disorder.\nRecorded February 2022
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-managing-the-cost-of-histio-care/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Managing-the-Cost-of-Histio-Care.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20211122T120000
DTEND;TZID=America/Chicago:20211122T130000
DTSTAMP:20260604T150520
CREATED:20250826T123724Z
LAST-MODIFIED:20250910T140330Z
UID:10000595-1637582400-1637586000@www.erdheim-chester.org
SUMMARY:2021 ECD Virtual Medical Symposium
DESCRIPTION:Watch webinar on youtube \nThe 8th Annual International ECD Medical Symposium was held on November 16\, 2021. This virtual experience was organized in hopes that the medical community is provided the opportunity to share scientific findings\, patient outcomes\, and case studies related to Erdheim-Chester Disease and other histiocytic disorders.
URL:https://www.erdheim-chester.org/event/2021-ecd-virtual-medical-symposium/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/2021-ECD-Virtual-Medical-Symposium.png
END:VEVENT
END:VCALENDAR