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!
Puberty? I've never heard
Ivan Borshchevsky - Russian Federation
I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn't invite me to their games, so I preferred books to humans and became a real bookworm. That
Walking with Lems: My story
Jessica Cassar - Australia
There is many simplicities in life in which we take for granted everyday, simplicities that happen to the body naturally that we never think of. Breathing, talking, walking, when those simplicities are
Rare Disease on Vacation
Sibylle DeRosa - United States
My story started while I was vacationing in Thailand, visiting my friend Peter.   I was 26 years old and it was my first trip all alone. I arrived in Bangkok in June 1984. I had just finished a big part