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ERN BOND Natural History Database Questionnaire

ERN BOND is launching one questionnaire addressed to healthcare professionals & patient groups and one dedicated to patients with the aim to take stock of the registries or databases being used in Europe and to identify the main challenges faced by stakeholders with data entry into a natural history database. 

The International Workshop Foramen magnum stenosis in children with achondroplasia

The International Workshop Foramen magnum stenosis in children with achondroplasia, organized by BOND and ICCBH, is a pre-meeting workshop taking place at ICCBH on Saturday 22 June 2019, 07:30-11:50, at Salzburg Congress Centre.

2019 ‘Bone Curriculum’ Symposium

Friday 15 March 2019 Pre-Symposium Course on Rare Bone Diseases, Friday 15 and Saturday 16 March 2019 Bone Curriculum Symposium. Organised by the KBVR/SRBR Osteoporosis and Fracture Prevention Group

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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.

2019 ‘Bone Curriculum’ Symposium

Friday 15 March 2019 Pre-Symposium Course on Rare Bone Diseases, Friday 15 and Saturday 16 March 2019 Bone Curriculum Symposium. Organised by the KBVR/SRBR Osteoporosis and Fracture Prevention Group

The first international conference on Quality of Life for Osteogenesis Imperfecta

“Quality of Life 4 OI”, which is going to take place at Amsterdam RAI Exhibition and Convention Centre from the 22nd to the 25th of November 2019, is the first international conference on the theme of quality of life for people with OI.

The 9th International Conference on Children’s Bone Health

The 9th International Conference on Children’s Bone Health will take place in Salzburg, Austria, from the 22nd to the 25th of June 2019.

Below, some useful information about it.

Fibrous Dysplasia and McCune-Albright Syndrome: 4th Meeting of International FD/MAS Consortium

SAVE THE DATE! May 28th and 29th, 2019, Florence, Italy. Fibrous Dysplasia and McCune-Albright Syndrome: 4 th Meeting of International FD/MAS Consortium 

ACAR Onlus 11th meeting in Tirrenia, Pisa

ACAR Onlus (Associazione Conto alla Rovescia) is an Italian association which has the goal to spread the knowledge and research about Ollier/ Maffucci Syndrome.

The Norwegian OI organization is celebrating 40 years!

This weekend (11th-12th May) the Norsk Forening for Osteogenesis Imperfekta (the Norwegian OI Organization) is celebrating 40 years!

The First European Achondroplasia Annual Meeting in Norwich

Save the date for the First European Achondroplasia Annual Meeting at The Assembly House, Norwich, on Thursday 23rd May!

The 3rd ANDO National Meeting in Coimbra, Portugal

We are sharing with you today that the 3rd ANDO National Meeting will take place on the 29th June in Coimbra, Portugal!

Quality of Life 4 OI, the conference on quality of life with Osteogenesis Imperfecta

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam!

Mission

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