by Asmaa Javed | Sep 26, 2024 | Voices of ECD
When I was diagnosed, I was told that as advanced as I was I had approximately 48 months to live. I feel very hopeful about the medication I am on, the support from family, friends, church, the ECDGA community volunteers, Dr. Hendrie, and the many doctors who dedicate...
by Asmaa Javed | Sep 26, 2024 | Voices of ECD
I remain hopeful in God who gives me strength. I’m thankful for the amazing people I’ve met on this journey, and I’m thankful for every memory I’ve created with my son and loved ones. View PDF
by Asmaa Javed | Jan 23, 2024 | Past Awards
Francesco Peyronel, MD (Meyer Children’s University Hospital – IRCCS, Firenze, Italy) Year Awarded: 2024 Amount: 50,000 USD Survival of patients affected by Erdheim-Chester disease (ECD) has substantially improved over the last decades, thanks to the increased...
