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!
Gavins Story
Natasha Tenner - United States
My Son, Gavin was born and appeared to be a perfect healthy baby on August 28th 2017, weighing in at 7lb 8oz. Three days after being discharged from the hospital, my phone rang, on the other end was his
KEEP ON FOLLOWING YOUR
Todd Sledge - United States
On the night of September 9th 2016, I honestly felt as if I had a stomach virus or had eaten some type of bad food product. Within the early hours of Monday morning, the 12th, I knew something was wrong,
Landau Kleffner Syndrome
Michelle Whitelaw - Australia
My name is Michelle Whitelaw. I am from Brisbane Australia. My 13 yr old son, Jai Whitelaw, has Landau Kleffner Syndrome with EESES and Autism. He has idopathic refractory epilepsy. He was diagnosed in