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!
A rare and creeping neurological
Romano - Netherlands
FOSMN syndrome
About six or seven years ago I went to see my doctor about a twitch on the left side of my face. She didn't know what it was, and since it seemed to fade I paid no mind to it any further. About four years
I’d Never Heard Of ALD/AMN
Satish - India
Adrenomyeloneuropathy
I had no idea there is such a thing as ALD/AMN though I am now aware.My son Rohan, had started working after completing his BBA and within a few months he just could not walk. Around this time four years
To young for this ? So
Celine - United Kingdom
Interstitial lung disease
Well they say 3s a lucky number not for me I'm 47 yr old f had this disease around 2 half to 3yr isherwood since I stopped smoking 20 a day after having problems got sent to see a few professionals regarding