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.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Rare Disease Day raises awareness of disorders that affect very few of us. An ECD patient in Washington shares her story of fighting to save her own life.
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
Former sports journalist Joe Lofaro has little memory of Oct. 23, 2015, when his son Daniel loaded him into a car at his Martin, Tennessee, home and said, ‘Come on, Dad, we’re going for a ride.”
by Asmaa Javed | Dec 31, 2024 | Voices of ECD
What one UK family faced with Erdheim-Chester Disease. By Chesnee Green September 13, 2018 Erdheim-Chester Disease (ECD) patients are fighting a daily battle with their mental and physical health. Likewise, the caregivers are also fighting a daily battle. Many times,...
