by Asmaa Javed | Jan 2, 2025 | Newsletters
by Asmaa Javed | Jan 2, 2025 | Newsletters
by Asmaa Javed | Jan 2, 2025 | Voices of ECD
A rare disease patient shares her fight to find the solution she desperately needed. By Hiba Tohmé My name is Hiba Tohmé, a 45-year-old young woman, mother of a 19-year-old boy. I led a quiet and serene, dynamic, and hard-working life until that famous March 2020;...
by Asmaa Javed | Jan 2, 2025 | Voices of ECD
When hope was in short supply, this Erdheim-Chester disease patient found a medical team that went above and beyond, bringing him the hope he needed to gain a life he could embrace. By Adam Green In July of 2017, I received a phone call that would change my life. I’d...
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Joe Lofaro raises awareness for Rare Disease Day in his community by sharing his story of battling this rare disease, no matter the obstacles.
