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 | Uncategorized
“When you become very good at caregiving, you have to understand the difference between a ‘laugh cry’ and a ‘sad cry’,” he said as he addressed a room of people going through similar situations.
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,...
