Erdheim-Chester Disease Global Alliance

06/19/2026

Every dollar makes a difference. Small contributions add up to real impact supporting patients, advancing research, and strengthening the ECD community.

Progress Update Goal: $25,000 We still have work to do, but together we can get there. This week's matching challenge means every donation has twice th ...

06/17/2026

Double your impact today. Every gift helps advance research, expand patient support, and raise awareness for ECD and right now, every dollar goes twice as far.

Did you know? A $50 donation becomes $100. A $100 donation becomes $200. A $250 donation becomes $500. Thanks to a generous matching donor, every gift made ...

06/15/2026

Double your impact this week! Every dollar raised brings us closer to stronger support, greater awareness, and more hope for the ECD community. Now is the time to make every contribution count.

This week, every donation goes twice as far. The ECDGA is excited to announce a special Week 3 Matching Gift Challenge for the 3rd Annual Fun Run, Walk or R ...

06/11/2026

Want to be featured? Share your Fun Run moments teams, miles, and meetups and you could be spotlighted during the event!

We want to feature YOU during the ECDGA 3rd Annual Fun Run, Walk or Roll! Send us photos of: Team members Walks, runs or Rolls Team gatherings Your photos m ...

06/10/2026

Missed the ECDGA events—or want to revisit key moments? Now you can access expert insights, research updates, and global discussions anytime.

Please highlight on the website as a news story

06/09/2026

𝗪𝗘𝗘𝗞 𝟮 𝗖𝗛𝗔𝗟𝗟𝗘𝗡𝗚𝗘 𝗜𝗦 𝗛𝗘𝗥𝗘!

This week is all about building your team!
Recruit 5 or more new team members and your team will receive a $150 bonus added to your fundraising total!
Invite friends, family, coworkers, neighbors, and supporters to join your team today.
Together, we can raise awareness and support for the ECD community.

WEEK 2 CHALLENGE IS HERE! This week is all about building your team! Recruit 5 or more new team members and your team will receive a $150 bonus added to you ...

06/02/2026

It starts NOW and early action pays off. Kick off the Fun Run strong and you could earn bonus funds for your total. Move, share, fundraise and climb the leaderboard fast.

THE FUN RUN STARTS TODAY! Welcome to FAST START MATCH WEEK For Week One only: Top 3 Teams Top 3 Individual Fundraisers will each receive an EXTRA $100 added ...

05/27/2026

Ziggy is proud to announce the ECDGA 2026 Award Honorees individuals whose leadership, dedication, and advocacy continue to inspire meaningful change throughout the Erdheim-Chester disease community and beyond. These honorees represent the very best of compassion, innovation, and commitment to improving the lives of patients and families affected by rare diseases.

Join us in celebrating their incredible contributions and the impact they continue to make every day. Watch Ziggy’s special announcement video and help us recognize these outstanding leaders as we look ahead to an exciting year for the ECDGA community.

05/02/2026

𝗘𝗖𝗗𝗚𝗔 𝗛𝗼𝘀𝘁𝘀 𝟭𝟭𝘁𝗵 𝗔𝗻𝗻𝘂𝗮𝗹 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗦𝘆𝗺𝗽𝗼𝘀𝗶𝘂𝗺 𝗶𝗻 𝗕𝗶𝗿𝗺𝗶𝗻𝗴𝗵𝗮𝗺, 𝗔𝗟

On May 1, 2026, the ECDGA Medical Symposium brought together leading experts, researchers, and clinicians dedicated to advancing the understanding and treatment of Erdheim-Chester Disease.

Throughout the day, medical professionals shared the latest research, clinical insights, and emerging therapies fostering collaboration and driving progress toward better outcomes for patients.

This symposium highlighted the power of partnership between the medical and patient communities, reinforcing our shared commitment to innovation, education, and hope for the future.

Thank you to all who participated and continue to push the field forward.

05/01/2026

𝗘𝗖𝗗𝗚𝗔 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 & 𝗙𝗮𝗺𝗶𝗹𝘆 𝗚𝗮𝘁𝗵𝗲𝗿𝗶𝗻𝗴 𝗛𝗲𝗹𝗱 𝗼𝗻 𝗔𝗽𝗿𝗶𝗹 𝟯𝟬, 𝟮𝟬𝟮𝟲 𝗶𝗻 𝗕𝗶𝗿𝗺𝗶𝗻𝗴𝗵𝗮𝗺, 𝗔𝗟

On April 30, 2026, the ECDGA Patient and Family Gathering brought together an incredible community of strength, support, and shared understanding. 💙

Patients, families, and caregivers connected in a meaningful way—sharing stories, learning from one another, and reminding us all that no one faces Erdheim-Chester Disease alone.

We were especially grateful to have medical professionals join the gathering, engaging directly with patients and families while sharing their research, expertise, and insights. These conversations helped bridge the gap between science and lived experience in a truly impactful way.

From heartfelt conversations to moments of hope and encouragement, this gathering was a powerful reminder of the resilience within our community and the importance of coming together.

Thank you to everyone who joined us and continues to support the ECDGA mission. Together, we are stronger. 💫