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
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News
100 days until Rare Disease Day 2020!
100 days until Rare Disease Day 2020!
The countdown has begun for the 13th edition of Rare Disease Day! Rare Disease Day will take place on 29 of February 2020, the rarest day of the year. The campaign is open to everyone to get involved ...
21 Nov 2019
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
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Tell your story!
Always Tired and Bruising
Anthony - United Kingdom
Immune thrombocytopenia (ITP)
After over 13 years of living with my ITP I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least.It all started in 2005 when I began getting random purple
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
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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