ERN BOND

European Reference Network
on rare bone diseases

Welcome to our website

Network

ERN BOND is one of the 24 existing European Reference Networks (ERNs). In particular, ERN BOND aims to improve access to high-quality healthcare for patients suffering from rare bone diseases.

Mission

ERN BOND aims to implement measures that facilitate multidisciplinary, holistic and patient-centred care provision for people living with rare bone disorders, ensuring realisation of their fundamental human rights.

Vision

The ambition of ERN BOND is to bring rapid interchange of information, skills and practice to shorten time to diagnosis and treatment, supporting patients affected by rare bone diseases and their families.

ERNs for rare and complex diseases

European Reference Networks are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. 24 thematic ERNs, gathering over 900 highly specialised healthcare providers from 26 countries, are working together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency.

The ERN on rare bone diseases

ERN BOND aims to promote good quality and safe care to patients with rare bone disorders. European Reference Networks allow doctors to share their knowledge, data and resources. Here’s the story of Elisa, who suffers from OI.:

 What I am expecting from the ERNs is more research in order to improve the quality of life of people affected by rare disorders. – Elisa

Latest 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, an investigational, once daily injection analog of C-type Natriuretic Peptide (CNP) for children...

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,...

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