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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.

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4th Conference on European Reference Networks

Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference.

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