Patient involvement is the key to effective research for rare diseases
28 february
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2019 events
Tell your story!
Living with Spinocerebellar
Allan - Canada
Spinocerebellar ataxia type 2
Hi, my name is Allan Rowley. Thanks for taking the time to read my story. I’ve started a GoFundMe campaign because I suffer from a condition with no known cure. It’s a disorder called Spinocerebellar Ataxia
Our Rare Cutie
Sarah Roy - United States
1q21.1 microdeletion syndrome
Cecilia was born with a multitude of health issues including hypotonia, suck/swallow issues, severe reflux and other complicated GI issues. She had seizures like episodes and spent all day arching in severe
Invisible illness
Kat - United States
Juvenile Spondyloarthropathy Arthritis, Amplified Musculoskeletal Pain Syndrome
Hi! I'm Kat and I'm in my first year of high school at 14 years old. At three years old, my life kind of broke and I never knew because, well I was three. At this time I was diagnosed with Spondyloarthropathy