Patient involvement is the key to effective research for rare diseases
28 february
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
2018 events
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Síndrome de Noonan,No lo
Marga - Spain
Somos una familia como cualquier de vosotras,hace 15 años nacio Miguel y con el vino el Síndrome de Noonan,con el cual estamos luchando todos,y digo todos porque Miguel es el afectado pero todos los que
Baby Frank is a Fighter
Jennifer Zillins - United States
I had an emergency c-section at 36 weeks. My Baby was born with a life threatening congenital heart defect called Dilated cardiomyopathy. He has been hospitalized since his birth 7 weeks ago. This is a
Tarlov Cyst, dolor cronico
simona chitoran - Spain
 Es primordial saber que es el dolor, como afrontar el miedo que provoca el dolor, miedo es ansiedad, ansiedad es depresión....las pastillas tienen efectos secundarios, el dolor también.  Pregunta: estamos