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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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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Tell your story!
Chylles' ROHHAD Fight
Stacie - United States
ROHHAD
Chylles Madalyn was healthy, high energy little girl with no fears, no worries & full of life. That's before she was affected by ROHHAD symptoms just prior to her 3rd birthday. After a year long battle
I strive for excellence
Kerry Ann - United States
Triple X syndrome
Imagine a world where you do not appear to have learning disability. I have a rare chromosome syndrome that few people have heard of: Trisomy X chromosome syndrome, also called Triple X syndrome or 47,XXX.
Tumbelina
Ernestina (Ernie) - United States
Silver-Russell syndrome
I had to show my California ID, when I was already over 18 to a lady that works at Walmart so I could get a sample of a pizza that was being sold. Yup, just for a slice of pizza, I mean I laughed it off
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