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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 Rare Diseases (EJP-RD). The Course is made up of 5 days of training organized by Istituto Superiore di Sanità (ISS) in close collaboration with,...

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.

All the News

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…

ERN BOND Natural History Database Questionnaire

ERN BOND has been launched one questionnaire addressed to healthcare professionals & patient groups and one dedicated to patients.

Thank you so much to everyone who participated!

Presentation of the report MonitoRare of UNIAMO

BOND ERN at the presentation of the report MONITORARE of UNIAMO in Rome, the 3rd of July.

Mission

The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBDs), supporting them in the full realization of their fundamental human rights.

Vision

BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment. BOND will develop, with PAGs, evidence/consensus-based guidelines to improve agreed outcomes in the 3 exemplar conditions, OI, XLH and ACH.

Strategic Plan

The ERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentin. This considerable group of diseases present a significant variation in clinical outcomes and limited research program are currently available…


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ERNBOND Network

ERN-BOND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern

European Reference Networks for rare and complex diseases