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Erdheim-Chester Disease Global Alliance
A Nonprofit 501(c)(3) Organization
P.O. Box 775, DeRidder, LA 70634

"Supporting Those Affected by Erdheim-Chester Disease"
NIH Researchers Educate Doctors About ECD in New Orleans
Erdheim-Chester Disease and the NIH Undiagnosed Disease Program were discussion topics at joint LSU and Tulane University event.
NIH Researchers with ECDGA President in New Orleans
From left to right: William Gahl, M.D., Ph.D., Kathleen Brewer, ECD Global Alliance President, 
and Juvianee Estrada-Veras, M.D.
April 28, 2017 - The Louisiana Cancer Research Center in New Orleans hosted Louisiana State University and Tulane medical students and faculty to listen to researchers from the National Institutes of Health discuss the agency's Undiagnosed Disease Program and research being done in Erdheim-Chester Disease as part of the program.  Read more.
ECD Presentations from Around the Nation
ECDGA volunteers recognized during National Volunteer Week
ECD Global Alliance Volunteers Recognized During National Volunteer Week

In the U.S., from April 23 - 30, volunteers from around the world were acknowledged for their contributions. The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honored 37 volunteers on their social media channels during the week. ECDGA volunteers are the lifeblood of the organization supporting the community and contributing more than 2,300 hours of service to numerous essential programs and functions. Read more.

Thank you to all the volunteers who dedicate their time, energy, resources, and skill to the work of the ECDGA. You help the ECD community grow stronger every day!

ECD Volunteers recognized during National Volunteer Week on social media

Bridget & John Gates RuthAnn Batchelder Simon Dedrick
Vivian Dooley Abigayle Brewer Robert Bunge, M.D.
Anzhen Qin Dearbhaile Dooley Randy Brown, C.P.A.
John Schulz Jessica Royal Rusty Kuhn
Teresa Keegan Josef Lacy

Medical Symposium & Patient and Family Gathering Volunteers:

Sonia Maskas, Susie Cooper, Rose Dooley, Damien Dooley, Ena Brophy, Kevin Rase, Julie and Lexi Jones, Jason Corkran, Charles Balnaves, Alice Nilsen, Pal Feste, Gadi Bauchman, Julieta Fonterosa, Vanessa Poulet, Stephen Morris

Board of Director Members:

Linda Adams, Ph.D., Kathy Brewer (President), Jean Campbell, Pam Fleming, Rachel Mitchell (Treasurer), Glenn Padnick, Juvianee Estrada-Veras, M.D.

Anzhen Qin
Anzhen Qin
Why ECD patient, Anzhen Qin, volunteers to support others affected by ECD in China

Chinese Erdheim-Chester Disease patient Anzhen Qin shares his journey to an ECD diagnosis and how it inspired him to help others in his country learn and cope with the debilitating and life-threatening disease. Due to his work and the assistance of the ECDGA, Chinese ECD patients can now easily find each other, no longer feel alone, and find doctors in Beijing willing to help them.  Read his story.
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