Matriarch, President and Founder of the ECD Global Alliance: Kathleen Brewer. Over the last 10 years, Kathy kept her promise to never stop searching for answers.

Kathy’s perseverance through the trials and tragedy led her to what the ECD Global Alliance is today. Alongside the parents of an ECD patient, who has since passed away, and the support of friends, patients and families, Kathy submitted the paperwork to make it official. On August 19, 2009, Erdheim-Chester Disease Global Alliance was officially registered as a non-profit organization. 

REACHING THE IMPOSSIBLE TOGETHER
Here are just a few things you have helped accomplish over 10 years!

Awarded over $650,000 to ECD research	Funded an ECD Patient Registry
Hosted exhibits at three specialty medical conferences	Provided educational talks and materials at medical schools
Served over 600 families worldwide with information, physician contacts, treatment access help, peer-to-peer connections, etc.	Hosted seven international patient meetings Hosted seven international medical meetings and one US-based meeting

LAUNCHING INTO THE FUTURE
What does the next decade look like for the ECDGA?

With your help, it will be possible for the ECDGA to continue to listen to the needs of our members, search for more answers, support more patients in more
locations, fund research and advocate for more effective treatment options. Ease of diagnosis will be improved through awareness and education of the medical
community, all helping to create a better future for all touched by ECD.

The accomplishments of the ECD Global Alliance are the result of a strong community, willing to join hands to fight Erdheim-Chester Disease one day at a time. There is still more work to do, but there is hope and we will continue the fight! Thank you for your contributions!

Learn More