Erdheim-Chester Disease Global Alliance

Topic: Survivorship in Erdheim-Chester Disease: Incorporating the patient voice
2025-09-23 13:00 - 14:00 (America/Chicago)
Date: September 23, 2025
Time: 1:00 PM CT
Speaker: Gaurav Goyal, M.D.
University of Alabama at Birmingham
Dr. Goyal was born and raised in India and completed his Hematology-Oncology Fellowship at the Mayo Clinic in Rochester, Minnesota. During his time at the Mayo Clinic, he developed a specialized focus on histiocytic disorders, including Erdheim-Chester Disease, Langerhans cell histiocytosis, and Rosai-Dorfman Disease. He conducted multiple studies on histiocytosis and played a key role in establishing the first multidisciplinary Histiocytosis Working Group, aimed at improving care for individuals affected by these rare disorders.
Dr. Goyal subsequently joined the Hematology-Oncology Division at the University of Alabama at Birmingham (UAB), where he founded an Erdheim-Chester Disease care center. At UAB, he also launched the Histiocytic Disorder Survivor Study in partnership with the Erdheim-Chester Disease Global Alliance (ECDGA), further advancing research and support for patients with histiocytic disorders.

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Peer-to-Peer Community Chat
2025-09-30 13:00 - 14:00, 2025-10-28 13:00 - 14:00, 2025-11-25 13:00 - 14:00, 2025-12-30 13:00 - 14:00
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Chats 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.
Please read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar.
NOTE: Check your time zone here: Time Zone Converter.
There 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.

Spanish Community Chat
2025-10-14 11:00 - 12:00, 2025-12-16 11:00 - 12:00, 2026-01-15 11:00 - 12:00

Caregiver Community Chat
2025-10-14 19:00 - 20:00, 2025-11-18 19:00 - 20:00, 2025-12-09 19:00 - 20:00, 2026-01-13 13:00 - 14:00

Canadian Community Chat
2025-10-16 11:00 - 12:00, 2025-11-19 11:00 - 12:00, 2026-01-21 11:00 - 12:00

Topic: Exploring of alternating signaling and its impact on precision therapy in patients with Erdheim-Chester Disease
2025-10-21 14:00 - 15:00
Date: October 21, 2025
Time: 2:00 PM CT
Speaker: Samuel B. Reynolds, M.D.
Moffitt Cancer Center
Dr. Reynolds is originally from the Boston area and completed medical school at The University of South Florida Morsani College of Medicine. He would then complete an Internal Medicine residency and chief residency at The University of Louisville and a Hematology & Medical Oncology fellowship at The University of Michigan. He began to focus on histiocytic neoplasms in the later part of his training in Ann Arbor. Here, he founded the Michigan Histiocytosis Working Group and has since joined the Histiocytosis Care Network as a researcher and physician.
Throughout his career, Dr. Reynolds has been passionate about the molecular characterization and translational care of hematologic disorders. Under his T32 at The University of Michigan, he would publish several manuscripts pertaining to both outcomes with respect to targeted therapy and trends in peripheral blood monocytosis in histiocytic disorders. He currently serves as an Assistant Professor at the Moffitt Cancer Center and specializes in the research and care of myeloid and histiocytic neoplasms.
The webinar will explore the diversity of Erdheim-Chester Disease (ECD), both among patients and at the genetic level. Because ECD is a rare and complex hematologic cancer, individualized treatment requires a collaborative approach. Understanding each patient’s unique molecular profile—the DNA changes that drive their disease—is key to guiding effective therapy.

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Australian/New Zealand Community Chat
2025-10-24 18:00 - 19:00, 2025-11-20 18:00 - 19:00, 2025-12-15 01:00 - 02:00, 2026-01-26 01:00 - 02:00

Topic: Diagnosis and Treatment of Histiocytic Disorders
2025-11-19 06:00 - 07:00
Speaker: XinXin Cao, MD
Cancer Hospital, Chinese Academy of Medical Sciences, Chief Physician, PhD Supervisor, Deputy Director of Internal Medicine (Langfang Campus) Has long been engaged in clinical and basic research on histiocytic disorders.
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Topic: Erdheim-Chester Disease (ECD): Decoding diagnosis and treatments
2025-12-01 17:00 - 18:00
Speaker: Jerome Razanamahery, MD
Dijon University Hospital
Date: December 1, 2025
Time: 5:00 PM CET (UTC +1) (Paris Time)
Dr. Razanamahery is an expert in internal medicine with a recognized specialization in the field of rare histiocytoses, including Erdheim-Chester Disease (ECD). He is a clinician-researcher at the University Hospital Center of Dijon, where he heads the unit dedicated to histiocytic disorders.
With many years of experience and under the mentorship of Pr Haroche, Dr. Razanamahery actively participates in clinical research and is a member of national and international reference networks on histiocytoses. His commitment is to provide cutting-edge care while ensuring that every patient and their family receive clear information and personalized support to navigate the complexity of this disease as effectively as possible.
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French Community Chat
2026-01-09 08:00 - 09:00

Italian Community Chat
2026-01-20 11:00 - 12:00

11th Annual ECD Patient & Family Gathering - Birmingham 2026
2026-04-29 - 2026-04-30
Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering.
Birmingham, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites patients, families, healthcare professionals, and researchers to save the date.

Patient & Family Gathering (PFG): April 29–30, 2026

This event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research, clinical insights, and community resources. Attendees can expect educational sessions, opportunities to connect with peers, and updates on emerging treatments and patient care.
Further details on the hotel and program highlights will be released in the coming months.

Register
NOTE: Register before February 1st to take advantage of the early bird registration cost! Save $100 USD and register for only $100 USD!
Mark Heaney Awareness Award & Community Champion Award
February 1st, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award.

Please submit your nominations here.

Mark Heaney Awareness Award. Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.
Community Champion Award. 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.

Contact:
Erdheim-Chester Disease Global Alliance
Email: support@erdheim-chester.org
Patient Poster – Submissions
February 1, 2026 is the Last Day to Complete a Patient Poster for display at the Patient & Family Gathering. Please submit your poster information here!
Travel Scholarships
Travel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference.
Glenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022, he served with unwavering dedication on the ECD Global Alliance Board of Directors, always ensuring that the voices and needs of patients remained central to every decision.
In honor of Glenn’s legacy of service and compassion, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients, caregivers, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints.
Applications are now open for travel assistance for the 2026 ECD Conference. Funding is limited, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available.
Application Deadline: February 1, 2026 Award Notifications: No later than March 1, 2026
Apply Here: Glenn Padnick Memorial Travel Fund Request.
Register

11th Annual ECD Medical Symposium - Birmingham 2026
2026-04-30 - 2026-05-02 | UAB Heersink School of Medicine, 1670 University Blvd, Birmingham, AL, 35233, United States
Erdheim-Chester Disease Global Alliance Announces 2026 Medical Symposium
Birmingham, AL — The Erdheim-Chester Disease Global Alliance (ECDGA) and UAB School of Medicine invites healthcare professionals and researchers.

Medical Symposium: April 30–May 2, 2026

This event will bring together the global Erdheim-Chester disease community with leading medical experts to share the latest research, clinical insights, and community resources. Attendees can expect educational sessions, opportunities to connect with peers, and updates on emerging treatments and patient care.
Further details on the hotel and program highlights will be released in the coming months.

Register
NOTE: Register before February 1st to take advantage of the early bird registration cost! Save $200 USD and register for only $300 USD!
Mark Heaney Awareness Award & Community Champion Award
February 1st, 2026 – Last day to submit your nomination for the Mark Heaney Awareness Award & Community Champion Award .

Please submit your nominations here.

Mark Heaney Awareness Award. Nominate a medical professional who is working to improve the lives of ECD patients by bringing awareness to the disease within the medical profession.
Community Champion Award. 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.

Oral / Poster Presentation Abstracts
February 1, 2026- Abstracts Due.

Abstract submissions for the Medical Symposium on 1 May, are accepted here Please submit abstracts 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.

Travel Scholarships
Travel Assistance – The Glenn Padnick Memorial Travel Fund Now accepting applications for the 2026 ECDGA Conference.
Glenn Padnick lived a full and impactful life while navigating Erdheim-Chester Disease (ECD) for decades. From 2011 to 2022, he served with unwavering dedication on the ECD Global Alliance Board of Directors, always ensuring that the voices and needs of patients remained central to every decision.
In honor of Glenn’s legacy of service and compassion, his family generously established the Glenn Padnick Memorial Travel Fund. This fund provides financial assistance to help patients, caregivers, and medical professionals attend the annual ECD conference for those who may not otherwise be able to participate due to financial constraints.
Applications are now open for travel assistance for the 2026 ECD Conference. Funding is limited, and priority will be given to individuals who have never attended the event before. Our goal is to make this opportunity available to as many community members as possible with the resources available.
Application Deadline: February 1, 2026 Award Notifications: No later than March 1, 2026
Apply Here: Glenn Padnick Memorial Travel Fund Request.
Contact:
Erdheim-Chester Disease Global Alliance
Email: support@erdheim-chester.org
Register
