Patient Stories
Jason and Nola’s Story in Honor of Rare Disease Day
I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects… Read More
Valencia Bella’s Story in Honor of Rare Disease Day
Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where… Read More
Tara O’s Story in Honor of Rare Disease Day
Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and I also suffer from chronic migraines. I had… Read More
National Attention for Rare Disease Day Airs on Lifetime Television
This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment… Read More
Ramona’s Story in Honor of Rare Disease Day
I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stres
