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
See all events
Rare disease day 2018 video
Out now!
Official Rare Disease Day 2018 video!
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
Read all stories
News
Today is Rare Disease Day!
Today is Rare Disease Day!
Today is Rare Disease Day 2018! With events happening in over 90 countries and regions across the world, together we can raise awareness to help further the rare disease cause. 5 new countries are pa...
28 Feb 2018
Meet Mirina
Meet Mirina
Mirina stars in the Rare Disease Day 2018 official video and is living with Ehlers-Danlos syndrome. She was diagnosed at the age of 4 and has been living with the rare connective tissue disease from b...
09 Feb 2018
Read all news