Rare Disease Day is on 29 February 2020
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
2020 events
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Tell your story!
My son has donnai barrow
Tarah - United States
Donnai-Barrow syndrome
My son was diagnosed with Donnai-Barrow syndrome. 
Sudden loss of leg control
juares - Spain
Undiagnosed
Time to time, suddenly, I lose control and sensitivity in my legs. Then I fall down.It's long for aprox. 15 minutes.Nobody knows what is it.
Rare kidney syndrome with
Jessica - United States
Renal nutcracker syndrome
I was diagnosed with Nutcracker syndrome 2 years ago. I had multiple unexplained symptoms for years that all resulted from this rare syndrome. It wasn't until I had an appointment with a new doctor, that
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News
Reframe Rare for Rare Disease Day 2020
Reframe Rare for Rare Disease Day 2020
When the challenge of raising awareness for people affected by a rare disease still loomsOn Rare Disease Day we must re-double our effortsRe-think, re-envision, reimagineReframe what it means to be 'r...
30 Sep 2019
Thank you to all who took part in Rare Disease Day 2019
Thank you to all who took part in Rare Disease Day 2019
We have come a long way from the first Rare Disease Day which took place over a decade ago in 2008 when 18 countries took part. This year, Rare Disease Day was celebrated by patient groups, policy-mak...
14 Mar 2019
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