Erdheim-Chester Disease Global Alliance

01/07/2026

Registration is open for the ECDGA Patient and Family Gathering, April 29 to 30, 2026 in Birmingham, Alabama. Join patients, caregivers, and families for expert ECD updates, practical sessions, Q&A with clinicians, and community support. Early bird and award deadlines are February 1, 2026.

The Erdheim-Chester Disease Global Alliance and UAB School of Medicine are hosting a Patient & Family Gathering designed to support patients, families, ...

01/06/2026

From the bottom of our hearts, thank you. Because of this incredible community, we reached both End of Year goals: the $90K matching campaign and the $30K Impact Challenge. Your generosity fuels research, awareness, and vital patient support.

Dear ECDGA Community,From the bottom of our hearts, thank you.Because of your generosity, dedication, and belief in our mission, we reached two ex ...

01/05/2026

We’re down to the final hours. The ECDGA community has raised $28,950 of our $30,000 Impact Challenge and we are just $1,050 away. Every dollar given today is matched dollar for dollar. Help us cross the finish line now.

Of our additional $30,000 Impact Challenge, the ECDGA community has already raised an incredible $28,950. Today is the last day and we are only $1,050 away ...

01/02/2026

We are just $3,000 away from reaching the $30,000 ECDGA Impact Challenge goal, with only days left. Every donation is matched dollar for dollar through January 5, doubling your impact for research, awareness, and patient support.

In just one week, the ECDGA $30,000 Impact Challenge has brought us to an incredible $27,000 raised. We are deeply grateful for every person who has support ...

12/31/2025

We are already 30 percent of the way to unlocking our $30,000 Impact Challenge match. Your gift doubles its power. $25 becomes $50. $50 becomes $100. Every dollar fuels awareness, research, and patient support. Matching through Jan 5: fundecd.org?utm_source=fb_page&utm_medium=Erdheim-Chester+Disease+Global+Alliance&utm_campaign=publer

We’re already 30% of the way toward unlocking our $30,000 new Impact Challenge match, and it’s all thanks to supporters like you. $25 becomes $50 $50 become ...

12/29/2025

Thanks to you, we hit our $90,000 match goal. Now a generous donor will match the next $30,000 dollar for dollar. We have 7 days only to unlock it. Every dollar matters. Give by Jan 5.

A generous donor has stepped forward with an additional matching opportunity of up to $30,000. That means every dollar we raise will be matched—dollar for d ...

12/18/2025

The holidays can be joyful yet challenging for those living with Erdheim-Chester disease. The ECD Global Alliance encourages patients and families to prioritize rest, set boundaries, and practice self-care, reminding you that your well-being always comes first.

The holiday season is often filled with celebration, connection, and meaningful traditions. But for individuals living with Erdheim-Chester disease (ECD), t ...

12/16/2025

Ziggy the Zebra Talks About Staying Connected

We’re excited to share a new animated short featuring Ziggy the Zebra, the ECD community’s friendly mascot. In this brief video, Ziggy explains how the ECD Global Alliance hosts monthly online chats and webinars to help patients, caregivers, families, researchers, and medical professionals stay connected and informed.

These virtual gatherings provide a safe and welcoming space to discuss a wide range of topics related to Erdheim-Chester Disease, including diagnosis, treatment, symptoms, and quality of life. They also offer an opportunity for community members to build lasting relationships and find support through shared experiences.

If you have not yet registered with the ECD Global Alliance, we encourage you to do so at www.erdheim-chester.org to receive notifications about upcoming chats relevant to your role.
Watch now to learn how the ECD community connects from around the world through conversation, support, and shared understanding.

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.

12/15/2025

Reminder: Abstract Submissions Close February 1, 2026The ECD Global Alliance invites clinicians, researchers, and medical professionals to submit abstracts ...

12/12/2025

Registration is now open for the 2026 ECD Patient & Family Gathering in Birmingham, AL. Join patients, caregivers, clinicians, and researchers for connection, learning, and hope. Early bird registration ends February 1, 2026.

Registration is OPEN for the 2026 ECDGA Patient & Family Gathering! Early bird registration is open until February 1, 2026! Join us in Birmingham, Alaba ...

12/11/2025

As 2025 comes to a close, the ECD Global Alliance reflects with gratitude on the strength and generosity of our incredible community. Because of your suppor ...

12/10/2025

This weekend, ECDGA Board President Diane Schriner and staff member Jerome Henson had the privilege of meeting with esteemed medical leaders at the American Society of Hematology (ASH) Conference in Orlando, FL.

This weekend, ECDGA Board President Diane Schriner and staff member Jerome Henson had the privilege of meeting with esteemed medical leaders at the American ...