by Asmaa Javed | Dec 31, 2015 | Voices of ECD
Bob Rodgers and his wife, Phyllis, are hosting the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness of the rare disease. Bob was diagnosed with the rare Erdheim-Chester Disease following a knee injury.
by Asmaa Javed | Dec 31, 2015 | Voices of ECD
This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention to the medical condition but raising money for research.
by Asmaa Javed | Dec 31, 2015 | Voices of ECD
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 | Voices of ECD
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.
