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
2018 events
Tell your story!
Connie's Cause
Becky - United Kingdom
Congenital pulmonary lymphangiectasia
Hi please can anyone help, as a family we are desperate to find help for my 7 month old niece Connie Warren. She has been diagnosed with CPL - Congenital Pulmonary Lymphangiectasia a rare lung disease
Is this ALL I am?
Wendy - United States
Small fiber sensory neuropathy
I decided to add my experience here after reading Brooke's story. It has been almost fifteen years since the onset of Small Fiber Sensory Neuropathy in late 2004. The disorder is prefaced "Idopathic",
Progressive Pain
Laurie - United States
Ledderhose disease
About ten years ago I felt a painful lump in my left foot. I ignored it thinking I must have stepped on something. Over time I did a bit of research and discovered I have Ledderhose disease. I had my first