by Asmaa Javed | Dec 31, 2016 | Voices of ECD
A teenager suffering from Erdheim-Chester Disease gets to spend a day with military pilots and aircraft and pilot an aircraft simulator in his own personalized flight suit.
by Asmaa Javed | Dec 31, 2016 | Voices of ECD
Canadian patient tells about his journey with ECD and of hopes for a better healthcare system.
by Asmaa Javed | Dec 31, 2016 | Voices of ECD
“Despite the change that sickness has brought into Janet’s life, she welcomes each new day with open arms, and keeps the things that truly matter to her close by. This passage was written based on her everlasting optimism, and her radiant smile.”
by Asmaa Javed | Dec 31, 2016 | Voices of ECD
Hope, faith, and community come together for this Erdheim-Chester Disease patient to strengthen his fight against this debilitating disease.
by Asmaa Javed | Dec 31, 2016 | Voices of ECD
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 | 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.
