News

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.

First orphan drug for achondroplasia is validated

BioMarin Pharmaceutical Inc. recently announced that the European Medicines Agency (EMA) validated the Company's Marketing Authorization Application (MAA) for Vosoritide,…

Summer School: Rare Disease Registries and Data FAIRification

This International Summer School is a part of a series of training activities proposed by the European Joint Programme on…

ECRD2020 will take place online on 14-15 May

The Conference is a great opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community

COVID-19 HELP LINE

ERN BOND – The European Network for Rare Bone Diseases creates a 24-hour Help Line.

EJP-RD: ERN specific Calls for Fellowships and Workshop

In the frame of the EJP-RD project, there are two calls for funding opened on 3 February dedicated only to persons affiliated to either ERN Full Members or Affiliated Partners.

2020 Symposium of the KBVR/SRBR Osteoporosis and Fracture Prevention Group

The KBVR / SRBR Osteoporosis and Fracture Prevention Group is pleased to announce you that the Bone Curriculum Symposium and the PreSymposium Course on Rare Bone Diseases will take place on 12-13 March 2020 in Ghent (Belgium).

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…

Postgraduate Course in Paediatric Bone and Mineral Metabolism

5 - 6th March 2020, Birmingham. Birmingham Children’s Hospital, a member of the ERN BOND, in collaboration with other ERN…

2019 call for membership to join ERNs

The call for healthcare providers to join the 24 existing European Reference Networks just closed. A total of 841 applications…