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
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Rare disease day 2018 video
Out now!
Official Rare Disease Day 2018 video!
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
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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
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