Want to view this page and the form below in a different language?

We believe that the voice of the Erdheim-Chester Disease community becomes stronger when we all join together.  We invite you to join the community today.

Whether you or a loved one has been recently diagnosed with Erdheim-Chester Disease, you are a scientist/physician, or you are interested in the work of the ECD Global Alliance, you can join the organization to stay informed and be a part of a passionate group of people committed to making life better for those in the ECD community.

Why should you join our community?

  • Stay informed of what is happening within the community based on your interests.
  • Stay aware of the latest scientific findings, including new information regarding ECD treatments and management.
  • Meet other people who share your interests and experiences.
  • Get involved to make a positive difference in the lives of all affected by ECD.
  • It’s quick, easy and free!

Patients and family members can take a positive step in learning how to best live with ECD by joining the ECDGA.

Caregivers and friends can show support and learn more about ECD by joining the ECDGA.

Physicians and scientists can become part of a collaborative group of highly skilled professionals who are dedicated to learning more about ECD and finding ways to best treat ECD.

Please don’t delay, join today!


Join the ECD Global Alliance!

Thank you for considering registering with our organization. The ECDGA members are a community of people that come together to fight this disease one day at a time.

Why join the ECD Global Alliance?

  • Empowerment: “Alone we are rare. Together we are strong.” – National Organization of Rare Disorders (NORD)
  • Meet Other People: Cut through the isolation and make new friends.
  • Find the Latest Treatment Information: New treatments, tricks and information available from the organization and its members.
  • Have Fun: Be around people who “get it” and find ways to incorporate what you love into helping find a cure.
  • Gain New Skills: Volunteer opportunities are limitless.
  • Get Access to Experts: Access to ECD experts is available through the organization.
  • Help Others: “Be the change you want to see in the world.”
  • Eliminate a Challenge in your Life: Find a way to make your life and other’s lives easier.


Last updated: July 1, 2024

Contact Us

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

Featured Partners

Copyright 2024. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization. EIN# 27-0759192. | Privacy Policy