Adult Rare Bone Disease Network
The Adult Rare Bone Disease Network is a Rare Disease Collaborative Network aiming to improve the lives of adults living with rare bone diseases.
What is a Rare Disease Collaborative Network?
Rare disease collaborative networks (RDCNs) are an important part of the NHS architecture initiated by NHS England and NHS Improvement to improve care and support for patients with rare diseases.
There are currently 18 approved RDCNs which have been established to date across a range of specialties and disease groups of which the Adult Rare Bone Disease Network lead by Oxford University Hospital NHS Foundation Trust is one.
The priority areas of existing RDCNs include:
- Raising awareness of the rare disease
- Improving co-ordination of care
- Sharing of expertise and best practice
- Establishing a disease registry to improve the understanding rare diseases
- Research on treatment options and diagnostics
- Establishing a support network for patients and families, including co-ordinated transition from paediatric to adult services.
Which disorders fall within the network's scope?
There are 450 recognised rare bone disorders and whilst there are established specialist NHS centres for some bone disorders for children, there has been to date – no networks for adults. The Adult Rare Bone Disease Network brings together expertise from multiple disciplines to improve the lives of individuals living with rare bone diseases.
The pathways the Network will focus on initially are:
- Severe osteogenesis imperfecta including Type III
- X-linked hypophosphataemia
- Tumour induced osteomalacia
- Fibrous Dysplasia/ McCune Albright Syndrome
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