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 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!

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.

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 

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.

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…


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