Rare disease collaborative networks
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.
Adult Rare Bone Disease Network
Rare bone diseases encompass over 450 recognised disorders. While there are established specialist NHS centres for some bone disorders for children, there has been to date – no networks for adults. The key strength of this Adult Rare Bone Disease Network is the inherent expert multidisciplinary focus that the network will bring to improve patient care and outcomes.
The Disease areas the Network will focus on initially are:
- Severe osteogenesis imperfecta including Type III
- X-linked hypophosphataemia
- Tumour induced osteomalacia
- Fibrous Dysplasia/ McCune Albright Syndrome