by Asmaa Javed | Dec 31, 2016 | Old News
“It’s really hard knowing there is a drug out there that if I can’t get then my life is going to be over.” – Canadian patient with Erdheim-Chester Disease
by Asmaa Javed | Dec 31, 2016 | Old News
ECD Global Alliance president and founder, Kathy Brewer, spoke to a local club about the progress of the local non-profit.
by Asmaa Javed | Dec 31, 2015 | Old News
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 | Old News
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 | 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.
