The ECD Global Alliance is committed to including the thoughts and knowledge of the ECD community in the development of programs, materials, and research for people with ECD and their families.

The ECDGA Champions is our go-to group for opinions and feedback on a variety of ECD topics. Members can participate at the level that suits them best. Additional opportunities may come up for members to apply to fill essential roles within committees and participate in other projects.

By signing up to be a member of the ECDGA Champions, you allow us to contact you for future opportunities — you can always say no if the timing isn’t right for you or if you already have too much on your plate.



What is an ECDGA Champion?

ECDGA Champions include people with Erdheim-Chester Disease and their family members. This group directly impacts programs and initiatives for the community by sharing their experiences and insights with the ECD Global Alliance.

Because each person’s experience is unique, it is critical to hear from as many people as possible. Whether filling out a survey or participating in a focus group or committee, Champion members are helping to shape efforts for the entire ECD community.

What does membership look like?

Any individual ages 16 or older who has ECD or is a family member of a person with ECD can sign up to be a part of the ECDGA Champions.

After filling out a short registration form, you will receive regular requests via email to share your perspective and thoughts in surveys. Additional opportunities will be available as well, such as participation in focus groups, committees, and working groups.

The best part? It’s a no-pressure way to get involved. You choose how much, or how little, you want to be involved.

How does joining benefit you?

  • Opportunities to weigh in on ECD programs and initiatives that matter most to you
  • Insider perspective on projects at the ECDGA
  • Connections to the larger ECD community


Contact Us 

Last updated: July 10, 2024

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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