Latest News

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

All the News

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.

Presentation of the report MonitoRare of UNIAMO

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

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. 

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…


Like us on Facebook

Facebook Pagelike Widget

Our videos

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