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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Simona's Story
Grasiela - Poland
Hypotonia-speech impairment-severe cognitive delay syndrome
Simona is a 13 year old Polish girl who was born on the 21st April 2006 in Wexford General Hospital. At birth everything was fine but after 3 months developmental issues started to show. Simona has been
رحلة كفاح
هبه - Somalia
Mucopolysaccharidosis type 4
فتاة تبلغ من العمر 18 سنه عاشت حياتها مع مرض نادر هو مرض عديد السكاريد المخاطي من النوع الرابع اكتشفت بهذا المرض عندما كان عمرها 9 سنوات، وهذا المرض جعلها تعيش حياتها بين المستشفى و بيت ولكن هي لم تستسلم 
Maladie des os de verre
Laure - France
Osteogenesis imperfecta
Bonjour je suis nee avec la maladie des os de verre. Jai passé mon enfance dans des plâtre. Pas de sport, pas de risque... On crois que sa passe a l'adolescence on l'oublie, mais en faite a 30 ans on se
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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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