Erdheim-Chester Disease Global Alliance

Caregiver Community Chat
2025-08-12 18:00 - 19:00, 2025-07-08 18:00 - 19:00, 2025-06-10 18:00 - 19:00, 2025-05-13 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.

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.

Canadian Community Chat
2025-07-31 10:00 - 11:00, 2025-06-25 10:00 - 11:00

Peer-to-Peer Community Chat
2025-07-29 13:00 - 14:00, 2025-06-24 13:00 - 14:00

Australian/New Zealand Community Chat
2025-07-19 19:00 - 20:00

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

Spanish Community Chat
2025-06-28 09:00 - 10:00

Grief Community Chat
2025-06-24 18:00 - 19:00

Australian/New Zealand Community Chat
2025-06-18 - 2025-06-19
Register Today
10:00 AM to 11:00 AM Sydney, Brisbane & Melbourne
8:00 AM to 9:00 AM Perth
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.

Get Ready to Run, Walk & Roll for Hope! The 2025 Fun Run is Here!
2025-06-15 - 2025-07-15
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.
This 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.

Order Yours Today!
Key Event Details:

Event Dates: June 16 – July 15, 2025
Registration: Opens June 1, 2025 — $20 per person
Where: Anywhere in the world — it’s fully virtual
T-shirts are available for purchase. Order Today!
Form a team, represent your state or country, and walk with purpose

All funds raised support our global mission and bring us closer to better outcomes and ultimately, a cure. Let’s keep moving forward—together.
Register Today
Questions? Reach out to Renita.Page@erdheim-chester.org
Let’s step forward with strength. Let’s roll with resilience. Let’s run with hope.

Approved version

10th Annual ECD Medical Symposium
2025-05-26 07:00 - 2025-05-28 10:00 | The Renaissance Barcelona Fira Hotel, Plaza Europa, 50-52, L'Hospitalet de Llobregat, Barcelona, 08902, Spain
Register Here
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.

Abstract 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.
Submit Abstract
Schedule of Events Sunday, May 25, 2025 – Pre-Meeting Activity
5 – 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.
Monday, May 26, 2025 – Patient & Family Gathering.
8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope.
8:30 am – 4:30 pm Patient & Family Gathering Spend the day learning more about ECD from medical professionals, patients, and others.
6 – 8 pm Celebration Evening Spend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.
Tuesday, May 27, 2025 – Medical Symposium.
8 – 8:30 am Registration & Continental Breakfast Enjoy a light breakfast with others and prepare for an informational day full of hope.
8:30 am – 4:30 pm Medical Symposium Spend the day learning more about ECD from other investigators and clinicians. Discover possible future collaboration opportunities.
6:30 – 8:30 pm Medical Reception Spend time relaxing and meeting with friends.
Wednesday, 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.
Register Here
Host 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.
Agenda
A 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
Travel Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:

Subway. 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.
Private Transfer. The hotel website states that private transfer is available for 101 Eur (one way) on request.

Scholarship Help
We 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.
Awareness Nomination Opportunity
You 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.
Attendee Experiences
“ECDGA is doing a phenomenal job. Thank you team ECDGA for all that you do to improve patient care.”
– Radiologist
“It is my first ECDGA meeting and I really enjoyed it.”
– Basic Scientist
“This is the first time to attend an ECD meeting. This is a very amazing event which will definitely change my practice and attitude.”
– Hematologist

10th Annual ECD Patient & Family Gathering
2025-05-26 07:00 - 19:00 | The Renaissance Barcelona Fira Hotel, Plaza Europa, 50-52, L'Hospitalet de Llobregat, Barcelona, 08902, Spain
Register Here
Part 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.

The 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.
Register Here
Overview
The 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.
On-site simultaneous interpreters will enable participation for English, French, German, Italian, and Spanish speakers.
Schedule of Events
Sunday, May 25, 2025 – Pre-Meeting Activity
5 – 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.
Monday, May 26, 2025
8:00 am-8:30 am Registration & Continental Breakfast
Enjoy a light breakfast with others and prepare for an informational day full of hope.
8:30 am-4:40 pm Patient & Family Gathering
Spend the day learning more about ECD from medical professionals, patients, and others.
6:00 pm-8:00 pm Celebration Evening
Spend time with patients, family members, friends, and medical professionals for an evening of hope and celebration.
Who attends?
The 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.
Register Here
Host
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.
Agenda
A 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 ECD Global Alliance Conference
Group Room Rate: Single: 240 Euro/night; Double: 260 Euro/night
Hotel reservation deadline: April 21, 2025
Travel
Barcelona is served by the Josep Tarradellas Barcelona-El Prat Airport. Transportation options between the airport and the hotel include:

Subway. 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.
Private Transfer. The hotel website states that private transfer is available for 101 Euro (one way) on request.

Scholarship Help
We 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.
Awareness Nomination Opportunity
You 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.
Attendee Experiences
“We are all in the same boat, and our journey will be better together.”
– Susan Anderson, ECD Family
“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!”
– ECD Patient in Attendance
“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.”
– ECD Patient in Attendance

German Community Chat
2025-05-05 11:00 - 16:00
Date: May 5, 2025
Time: 12:00 pm
Register Today

The Leukemia & Lymphoma Society Support Series Part 1: Overview of Services
2025-05-02 12:00 - 13:00
Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.

Peer-to-Peer Community Live Chat with a University of Alabama Medical Student
2025-04-29 13:00 - 16:00
Date: Apr 29, 2025
Time: 02:00 pm
Register Today

Spanish Community Chat
2025-04-26 10:00 - 16:00
Date: Apr 26, 2025
Time: 11:00 AM
Register Today

Canadian Community Chat
2025-04-23 11:00 - 16:00
Date: Apr 23, 2025
Time: 12:00 pm
Register Today

Grief Community Chats Event 04/19/2025
2025-04-19 12:30 - 13:30
Date: 19 April, 2025
Time: 01:30 pm to 02:30 pm
Register Today

Australian/New Zealand Community Chat
2025-04-16 19:00
Date: Apr 16, 2025
Time: 08:00 pm
Register Today

Italian Community Chat
2025-04-15 11:00 - 16:00
Date: Apr 15, 2025
Time: 12:00 pm
Register Today

The Leukemia & Lymphoma Society Support Series Part 3: Clinical Trial Support Center
2025-04-01 07:00 - 16:00
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The 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.

Rosai Dorfman Disease
2025-03-13 12:00 - 13:00
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!

French Community Chat
2025-03-07 14:00 - 16:00
Date: March 7, 2025
Time: 03:00 pm
Register Today

The Leukemia & Lymphoma Society Support Series Part 2: Information Resource Center
2025-02-25 12:00 - 13:00
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.

Caring for yourself through the holidays
2025-01-23 12:00 - 13:00
Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.
