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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"
The Erdheim-Chester Disease Global Alliance Raises Awareness of ECD at USCAP 2017
Pathologists eagerly engage with ECDGA exhibitors to raise their awareness of ECD.
Dr. Picarsic and her ECD poster
USCAP speaker and ECDGA medical community volunteer, Dr. Jennifer Picarsic stands by her poster, "Pathological clues for the diagnosis of Erdheim-Chester Disease (ECD)
San Antonio, TX - March 20, 2017 - The Erdheim-Chester Disease Global Alliance (ECDGA) attended the United States and Canadian Academy of Pathology (USCAP) annual conference to raise awareness of Erdheim-Chester Disease (ECD) among attending pathologists this past week. The exhibit provided a variety of pathological resources developed by ECD Global Alliance medical community members. The trade meeting allowed the Alliance to connect with doctors able to possibly facilitate a diagnosis of ECD with increased knowledge of this rare disease.  Read more.
Special thanks to our dedicated volunteers who made the ECDGA's attendance at the USCAP possible. We could not have done it without you!

ECD medical community members who provided educational material, review, on-site support and contact information for pathology guide:
  • Thomas V. Colby, MD, Mayo Clinic, Scottsdale, AZ
  • Ronald Jaffe, MB, BCh, University of Pittsburgh School of Medicine, Pittsburgh, PA
  • Jennifer Picarsic, MD, University of Pittsburgh School of Medicine, Pittsburgh, PA
  • Elaine S. Jaffe, MD, Center for Cancer Research National Cancer Institute, Bethesda, MD
  • Benjamin H. Durham, M.D., Memorial Sloan-Kettering Cancer Center, New York, NY
  • Ronald S. Go, MD, Mayo Clinic, Rochester, MN
  • Ahmet Dogan, MD, PhD, Memorial Sloan-Kettering Cancer Center, New York, NY
  • Karen L. Rech, MD, Mayo Clinic, Rochester, MN

Graphic design artist: Abigayle Brewer
Vanderbilt University Medical Center
Vanderbilt University Medical Center
The Erdheim-Chester Disease Global Alliance Welcomes Vanderbilt University Medical Center to the ECD Referral Care Center Network
Nashville, TN is the newest location Erdheim-Chester Disease patients can go for treatment by ECD-knowledgeable doctors

DeRidder, LA, - March 16, 2017 - Vanderbilt University Medical Center in Nashville, Tennessee is the most recent addition to the Erdheim-Chester Disease (ECD) Referral Care Center network. Nishitha M. Reddy, M.B.B.S., MsCI and her team of ECD-knowledgeable specialists now can collaborate with a large community of other ECD-knowledgeable doctors and researchers to provide the best care available to ECD patients. Read more.
Josef Lacy during his initial testing for the clinical trial at the National Institutes of Health.
Josef Lacy during his initial testing for the clinical trial at the National Institutes of Health.
Drug Trial Blog Reveals What It's Like to be a Participant
ECD Global Alliance community member writes on his involvement in the Dabrafenib and Trametinib therapeutic trial at the National Institutes of Health

"[I] Started the day [by] stripping down to my skivvies and getting photographed from multiple angles, including close-ups of my hands, face, and eyes.  I wasn't allowed to tease my bangs, so it wasn't a good glamour shots shoot.  These pictures will be used to baseline my appearance as time goes on."  - Three Days a Blur (Josef Lacy, 2016)
 
Josef Lacy, Erdheim-Chester disease patient and ECD Global Alliance community member, humorously recounts the data collection phase of the National Institutes of Health's (NIH) clinical trial in his personal blog Josef's ECD Diary. Read more.
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