BOND - European Reference Network on Rare Bone Diseases

Rare bone diseases include disorders related to bone formation, modeling, remodeling, removal and defects in the mechanisms that regulate these processes. They result in short stature, bone deformities, dentition abnormalities, pain, fractures, and disability, and can adversely affect neuromuscular function and hematopoiesis.
The ERN BOND includes all rare bone diseases - congenital, chronic and genetic - affecting cartilage, bones and dentin. The initial focus of the ERN BOND is osteogenesis imperfecta, X-linked hypophosphatemia, achondroplasia as examples, based on disease prevalence, diagnostic and treatment challenges, and new emerging therapies, prior to extend its sector of action to other rarer bone diseases as soon as systematic approaches are codified.
Working with affected patients, ERN BOND will develop outcome measures of interventions based on patients' own opinion. The network will develop guidelines in order to develop and disseminate best clinical practice. As soon as new therapeutic approaches are developed, the ERN BOND will take charge of a prompt dissemination of information, to allow access to these innovative therapies to all affected patients. The ERN BOND, through the use of telematic systems, will undertake to disseminate knowledge and skills as well as promote meetings of the teams constituting the ERN and training courses. The objective of the ERN BOND is to reduce the time to diagnosis by rationalizing the diagnostic approach in the hope of introducing therapeutic innovations within 2-3 years.