Rare Disease Collaborative Networks (RDCNs) are an important part of NHS England’s approach to supporting the NHS to better care for patients with a rare disease. 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.

20 RDCNs have been established across a range of specialties and disease groups and in providers from a wide spread of regions. Whilst the RDCNs are organised by NHS England RDCCs can be from across the UK.

RDCNs help to bring together leading experts working in a particular rare disease area.

Collaboration between these experts has benefits including: improving understanding of the disease; raising awareness; standardising pathways; and establishing best practice.

RDCNs can be a forum to discuss complex cases and to promote national multi-disciplinary team (MDT) working, thereby ensuring the best outcomes for patients.

Some existing RDCNs are working towards developing their own disease databases or registries which will advance disease surveillance and research.

In addition to the benefits for patients and the service, the status of being part of an RDCN may have advantages for providers. Provider involvement in the network recognises their role as leaders in the field which is likely to further the organisation’s reputation both nationally and internationally. This may lead to greater public interest or increasing research funding.

Depending on the aims of the RDCN, trusts may need to make provision for network members to have dedicated time set aside in their job plans, although this will be different for each network. To ensure success and sustainability, RDCNs are encouraged, where possible, to spread the leadership and workload across the whole network. The establishment of an RDCN is not accompanied by funding; set up or running costs and do not attract additional reimbursement.

The independence afforded to RDCNs allows them to make their own decisions around how best to raise awareness and disseminate information. Some 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).

Some RDCNs may choose 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).

Applications can be received from two (or more) providers who wish to establish the RDCN together. One provider will act as the lead for the RDCN and this should be described in the application. Single site applications will be considered but any single site RDCNs will be encouraged to expand their membership.

Each potential RDCC will need to complete a section of the application form. Each provider wishing to join the RDCN must have a named lead clinician and the application must demonstrate the support of their Chief Executive.

Please email ayesha.ali2@nhs.net for more information on the application process.

The applications received over the course of a calendar year are reviewed on an annual basis by NHS England’s Rare Diseases Advisory Group (RDAG) who advise which applications should be supported. RDAG can also ask the Highly Specialised Commissioning team (HSCT) to seek additional information.

More information about RDAG is available on our website.

The decision to become an RDCC and come together to form a RDCN is made by expert clinicians working in a disease area. NHS England only considers applications that demonstrate the proposed RDCN has the support of the wider trust management and its Chief Executive.

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. Separate ‘light touch’ updates will be required to monitor the progress of the RDCN (further details below).

As an RDCN is not a commissioned service NHS England does not have a role in negotiating, endorsing or agreeing the structures, processes and functions within each RDCC (e.g. job planning, funding, project management, room capacity). These are matters for agreement within the organisation and should be considered before any application is made.

The Highly Specialised Commissioning team (HSCT) in NHS England will provide ‘light touch’ support to RDCNs. Each network is allocated a named commissioning manager.

RDCNs is also assigned an NHS England approved logo which they can use on publications and correspondence with patients, patient groups, other stakeholders and when applying for research funding for example.

The establishment of an RDCN is not accompanied by additional funding; set up and running costs are not reimbursed.

The reporting to NHS England is not demanding.

The application requires three objectives for the RDCN for their first year of operation, details about the disease and a brief project plan. These objectives should be practical and realistic and the responsibility for delivery should be for the whole network not just the lead provider.

If an RDCN is approved, the members have an initial introductory meeting with their assigned commissioning manager. After that they are asked to attend a ‘touch base’ meeting once a year with the commissioning manager and provide a brief annual progress report to RDAG for information and update.

Please email Dr Ayesha Ali, Medical Advisor, Highly Specialised Commissioning at ayesha.ali2@nhs.net