XIII Conference A.C.A.R. Aps: Working towards a multidisciplinary and shared approach of rare disease patients transition from paediatric to adult care management

A.C.A.R. Aps (Italian Patient Association for Multiple Osteochondromas, Ollier disease and Maffucci syndrome) will hold their XIII Conference from 14th to 16th April 2023 at the Grand Hotel Continental, Tirrenia [...]

#wiedu by LOUDRARE

LOUDRARE is a recently founded non-profit organization that has our ePAG Nadine Großmann among the founders. The goal of LOUDRARE is to build a digital community for people with rare [...]

Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic

ERN BOND coordination team and Italian rare bone diseases experts created the “COVID-19 Helpline for Rare Bone Diseases”, in collaboration with Italian Patient Associations. The helpline aimed at providing high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals.

Welcome EuRR-Bone!

The European Commission accepted our proposal on the call for projects aiming to support the development and creation of registries for rare diseases in Europe. We can now start to create EuRR-Bone – European [...]

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