RDCNs are made up of groups of providers (Rare disease collaborative centres (RDCCs)) who have an interest in developing understanding of a particular rare disease and are committed to working together to progress research, increase knowledge and improve patient experience. As such they should include providers that are research-active in a particular rare/very rare disease.

RDCNs are supported by the NHS England and NHS Improvement Highly Specialised Commissioning team (HSCT) and independently set their own priorities and objectives.

The work of the RDCN is separate to any existing contractual arrangements with NHS England and sits outside the scope of existing commissioned services. As a result, there is no change in funding to the trust or formal reporting arrangements.

Each year, HSCT will require the RDCN to submit a brief progress report and to attend a “touch base” meeting with their allocated commissioning manager. The progress report will be presented to the Rare Diseases Advisory Group (RDAG) for information and update.

In addition, some RDCNs will use networks they are already a part of or use the relationships they have with other organisations (for example Royal Societies, professional societies, charities) to develop their own communication with stakeholders which may or may not involve the creation of a website (developed and hosted by the lead provider).

13 RDCNs had been established to date across a range of specialties and disease groups which includes mosaic disorders with Great Ormond Street Hospital for Children NHS Foundation Trust as the designated provider.

The priority areas of these 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 of the epidemiology of the rare disease
• Research on treatment options and diagnostics
• Establishing a support network for patients and families, including co-ordinated transition from paediatric to adult services.

A clinical network is in the process of being set up for experts in mosiac disorders by Great Ormond Street Hospital dermatology tertiary centre with the support of the BAD and NHSE Specialised dermatology WPG.

As part of the RDCN-MDs they will be establishing a free annual clinical teaching/update day specifically for the named contacts. This will be held in London in person to try to foster a real network of clinicians who meet yearly and exchange knowledge, but will also have virtual access. It will also be possible for named contacts to attend the RDCN-Mosaic Disorders MDTs, which will occur three-monthly in London and virtually. This forum will be for learning but also for discussing cases.

If you are interested in becoming a named local consultant contact please register your interest here. This does not commit you to anything at this stage but will mean you are invited to a zoom meeting for further information and the opportunity to ask questions.

As an NHS organisation, the National Disease Registration Service (NDRS) collects patient data on cancer, congenital anomalies and rare diseases, and provides expert, timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England.

The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) is a comprehensive registration service that collects, and quality assures data about people with congenital anomalies and rare diseases across the whole of England. NCARDRS was established on 1 April 2015 in response to the UK Rare Disease Strategy and the Chief Medical Officer’s recommendation to ensure nationwide coverage of congenital anomaly registration.