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
2019 events
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PEDIACLINIC - Historia
Pediaclinic - Mexico
Primrose syndrome
Conoce la historia de Analy, una pequeña que fue diagnosticada con el Síndrome de Primrose. Sus padres tienen la esperanza de que al compartir su experiencia se genere un cambio y conciencia en la sociedad. 
Nkx2.1 & my kid
Tessa - United States
Brain-lung-thyroid syndrome, interstitial lung disease, Nkx2.1
Bobby was born at 28 weeks. After everything was brushed off as premature. Then I looked at other parents of premature infants and said, no I disagree. I was met with help & walls from different ends.
The Thunderbolts Release
Theresa - United Kingdom
Norrie disease
BOY WITH RARE GENETIC DISEASE RELEASES CHARITY SINGLE FOR RARE DISEASE DAYA fourteen year old boy from Essex, with the rare Norrie disease, has released a single called Unique to raise money for the charity