Facing the isolation and misinformation about paediatric rare diseases together
A platform focused on Education, Sharing and Research
A platform focused on Education, Sharing and Research in Rare Diseases
®Nicole Traubenek
Lenny was born with a rare congenital malformation of the esophagus called Esophageal Atresia (EA). He has other, even rarer, complex complications, has experienced life-threatening episodes and after many surgeries, he still can’t eat and lost the ability to walk. Lenny lives with his family in Southern Germany and the picture was taken in 2017.
Collective intelligence to increase the research on rare diseases
Patients, families and professionals working together to improve the quality of life
Share4Rare
Bringing together patients, families, carers, researchers and clinicians to contribute to:
Our first Research Communities
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Rare tumours
Meningioma, Solid Pseudopapillary Neoplasms of the Pancreas, Gliomatosis Cerebri, Myofibroblastic tumors, Vascular tumors, Paediatric melanoma, Xeroderma pigmentosum, Neurocutaneous melanosis.
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Neuromuscular diseases
Duchenne Muscular Dystrophy (DMD), Becker Muscular Dystrophy (BMD), Facioscapulohumeral, Muscular Dystrophy (FSHD), Limb Girdle Muscular Dystrophy (LGMD)...
If you are not in these groups, you can still be part of our open education and sharing community.
Share to drive progress in rare diseases
knowledge, experience, clinical data, hope…