Erdheim-Chester Disease Global Alliance

Caregiver Community Chat
2025-07-08 18:00 - 19:00, 2025-08-12 18:00 - 19:00, 2025-09-09 19:00 - 20:00, 2025-10-14 19:00 - 20:00, 2025-11-18 19:00 - 20:00 (America/Chicago)
Register Today
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.

French Community Chat
2025-07-11 07:00 - 08:00

Australian/New Zealand Community Chat
2025-07-19 19:00 - 20:00, 2025-08-15 19:00 - 20:00, 2025-09-12 19:00 - 20:00, 2025-10-24 18:00 - 19:00, 2025-11-20 18:00 - 19:00

Peer-to-Peer Community Chat
2025-07-29 13:00 - 14:00, 2025-08-26 13:00 - 14:00, 2025-09-30 13:00 - 14:00, 2025-10-28 13:00 - 14:00, 2025-11-25 13:00 - 14:00

Canadian Community Chat
2025-07-31 10:00 - 11:00, 2025-08-27 10:00 - 11:00, 2025-09-17 11:00 - 12:00, 2025-10-16 11:00 - 12:00, 2025-11-19 11:00 - 12:00

ECD, A Global Vision
2025-08-06 12:00 - 13:00
Watch webinar on youtube
Xavier Solanich, MD, PhD is an internal medicine physician at Bellvitge University Hospital (BUH), where he specializes in the treatment of patients with immunological disorders and rare diseases, including histiocytosis. In addition to his clinical work, he serves as a professor at the University of Barcelona and as principal investigator at the Bellvitge Biomedical Research Institute (IDIBELL). Dr. Solanich has contributed to numerous national and international research projects focused on autoimmune diseases, immunodeficiencies, and other rare disorders.
As the lead physician at the ECD Care Center at BUH, Dr. Solanich oversees the care of patients with ECD, a condition historically viewed as a multisystem inflammatory disorder. Recent breakthroughs in the genetics and immunology of the disease have revolutionized its understanding and treatment, prompting physicians to update and refine their protocols accordingly.

Topic: Managing Diabetes Insipidus (DI)
2025-08-28 14:00 - 17:00
[Arginine VasoPressin Deficiency (AVP-D)]
Speaker: Pat Gildroy, Ph.D
Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.
Register Here

Spanish Community Chat
2025-08-30 09:00 - 10:00, 2025-10-14 11:00 - 12:00

Looking Ahead: Erdheim-Chester Disease Awareness Week Is Coming Soon
2025-09-07 - 2025-09-13
As we move into the final weeks of summer, the Erdheim-Chester Disease Global Alliance (ECDGA) is preparing for one of the most impactful moments of the year—Erdheim-Chester Disease Awareness Week, observed globally from September 8 through 13.
This dedicated week is an important opportunity to raise worldwide awareness of Erdheim-Chester Disease (ECD)—a rare, life-altering blood cancer that affects individuals across continents, cultures, and communities. ECD can affect multiple organs, including the bones, brain, heart, lungs, and kidneys. Because symptoms vary widely and the disease is so rare, diagnosis is often delayed, making awareness and education especially critical.
At ECDGA, our mission is international in scope. Since our founding in 2008, we’ve built a supportive, collaborative community that now includes more than 1,000 families in over 75 countries. We are committed to ensuring that no matter where someone lives, they have access to information, resources, and a global network of support.
Erdheim-Chester Disease Awareness Week allows us to focus our efforts, share accurate information, and highlight the experiences of patients and caregivers around the world. Throughout August, we will begin rolling out educational content, awareness tools, and personal stories from across the global ECD community. These materials will help prepare supporters, families, and healthcare professionals to take part in the weeklong campaign.
This is also a time for action. We invite everyone—patients, advocates, friends, and medical professionals—to join the movement by following ECDGA on your preferred social media platform. Whether you use Facebook, Instagram, LinkedIn, or X (formerly Twitter), your voice and your shares make a difference. Each post helps raise awareness in new regions, among new audiences, and with those who may still be searching for answers.
Erdheim-Chester Disease Awareness Week follows two of our most important annual events: the Patient and Family Gathering and the International Medical Symposium, which were held earlier this year. These events brought together patients, caregivers, and leading researchers from around the world to share knowledge, strengthen connections, and highlight the latest scientific advancements in Erdheim-Chester Disease. Awareness Week builds on the momentum of those gatherings, expanding the conversation beyond the conference setting and into the broader global community.
We hope you’ll join us throughout August and beyond. Mark your calendar, follow along, and help spread the word. Together, as a global community, we can continue to shine a light on Erdheim-Chester Disease.
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.

German Community Chat
2025-09-11 11:00 - 12:00
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.
Register Today
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.

Topic: Survivorship in Erdheim-Chester Disease: Incorporating the patient voice
2025-09-23 13:00 - 14:00
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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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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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.
Register Here
