by Asmaa Javed | Dec 31, 2015 | Old News
A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal Jones, who is battling a rare disease called Erdheim-Chester.
by Asmaa Javed | Dec 31, 2015 | Old News
An ECD patient is interviewed and quoted in Popular Mechanics on how vemurafenib has changed her life.
by Asmaa Javed | Dec 31, 2015 | Press Releases
A film was created to increase awareness of ECD and provide hope to those fighting this disease. A special thanks to the video participants and Trovagene, Inc. for sponsoring the film.
by Asmaa Javed | Dec 31, 2015 | Press Releases
Louisiana is the ECDGA’s office location and the state has issued a Proclamation for its first-ever ECD Awareness Week.
by Asmaa Javed | Dec 31, 2015 | Press Releases
First of its kind – ECD Referral Care Centers were made possible in part by pharmaceutical funding.
