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
Tell your story!
Displasia toracica asfissiante
Marina - Italy
Ciao!Mi chiamo Marina e ho 22 anni.Sono nata con una rara malattia: la displasia toracica asfissiante conosciuta meglio come sindrome di Jeune. In Italia non ho ancora conosciuto nessun paziente della
ENZÖ Syndrome Myasthenique
Cindy ROCH - France
Je m'appelle Enzö j'ai 5 ansJe suis tout petit mais malgré la maladie j'ai pleins de rêves !Je suis né le 9 décembre 2012, 17 jours après ma naissance maman a compris que quelque chose n'allait pas, je
My life with the chronic
Veronica - Italy
My name is Veronica and I'm 38.I suffer from chronic intestinal pseudoobstruction since I was six but the path to diagnosis was long and difficult.I was subjected to numerous surgeries intestinal resection