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 twist of fate
Prateek - United States
Isolated Klippel-Feil syndrome
My name is Prateek Kumar Shukla. I am second year medical student at Kent State University - College of Podiatric Medicine. My journey towards becoming a foot and ankle surgeon is one shaped by my collective
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