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!
Olivia's story
Olivia - Canada
Ataxia-telangiectasia
Olivia is 5 years old and was just recently diagnosed with Ataxia Telengieactia (AT). This disease effects her mobility, immune system, speech and make her at greater risk for cancer. There is currently
Living with Parry-Romberg
Isabella - New Zealand
Parry-Romberg syndrome
Parry–Romberg syndrome is a rare disease characterized by progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face but occasionally extending to other
Living with Mowat-Wilson
Kori - Canada
Mowat-Wilson syndrome
When my daughter was diagnosed in March of 2018, I had no idea what Mowat-Wilson syndrome was at all, but all of Khloe's doctors gave us a lot of good websites to go and read up about it. Life with MWS