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:

  1. Raising awareness of the rare disease
  2. Improving co-ordination of care
  3. Sharing of expertise and best practice
  4. Establishing a disease registry to improve the understanding rare diseases
  5. Research on treatment options and diagnostics
  6. Establishing a support network for patients and families, including co-ordinated transition from paediatric to adult services.

What is the Adult Rare Bone Disease Network?

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 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

Interested in seeing which NHS trusts are involved?

Take a look at the interactive map we’ve put together below!

Need support for your condition?

Connect with one of the amazing patient organisations representing your condition!

Brittle Bone Society

The Brittle Bone Society is the sole organisation spefically set up to address the needs of people born with Osteogenesis Imperfecta (OI). This charity seeks a world in which the needs of people living with OI are better understood, respected and fully met.

Do you need support for OI? Visit the Brittle Bone Society’s website via the button below:

XLH UK

XLH UK is the only registered charity which specifically supports those with X-linked hypophosphataemia (XLH) and related disorders XLH and related disorders in the UK. Their mission is to help those they support through research, support and advocacy.

Do you need support for XLH or a related condition? Visit XLH UK’s website via the button below:

FOP Friends

FOP Friends was registered as a charity in 2012 and aims is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects, and support those living with FOP and their families.

Do you need support for Fibrodysplasia Ossificans Progressiva or a related condition? Visit the FOP Friends website via the button below:

FDSS UK

The Fibrous Dysplasia Support Society (FDSS) was formed in 2007 by a group of patients, and their carers, who are affected by Fibrous Dysplasia or McCune-Albright Syndrome (MAS). It exists to provide information and support by sharing our knowledge and experience of the condition with those who would like to know more.

Do you need support for Fibrous Dysplasia or McCune-Albright Syndrome? Visit the FDSS UK website via the button below:

Metabolic Support UK

Metabolic Support UK are a charity that has, since 1981, supported people living with Inherited Metabolic Disorders (IMDs) and their communities. Under our remit of helping people living with IMDs, we offer support to a number of rare bone diseases and can provide a wide variety of services from individual support and advice to advocating for your rights at the highest levels as well as much more.

Need support for your IMD? Get in touch with us via our contact form or give us a call via the number on the contact page:

Want to hear more from these patient organisations? Hear from representatives from each of them.

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