The UK is a recognised leader in research on rare diseases, their treatment and care for those affected. The diagnosis, treatment and management of rare diseases requires the highest level of partnership working to remove unnecessary barriers. We want to encourage and develop collaboration at all levels and wherever possible to build upon the best research, diagnosis and service provision that already takes place in the UK and elsewhere.
The establishment of European Reference Networks (ERN) supports these objectives. They encompass the principles of better access for patients to highly specialised, safe care of the highest quality, support European co-operation on highly specialised healthcare, knowledge pooling, improving diagnosis and care in medical domains where expertise is rare. This type of collaboration can maximise the speed and scale of adoption and spread of innovations in medical science and health technologies. ERN can also be focal points for medical training and research, information dissemination and evaluation.
To ensure there is oversight at a UK level, it has been agreed that applications from recognised healthcare providers must be endorsed by the Rare Diseases Advisory Group (RDAG), which is led by NHS England with representation from across the UK.
The purpose is not necessarily to create new care centres but to link existing ones, and/or recognise existing networks. Before networks can be given the stamp of approval by the Commission, each healthcare provider in the network needs to have the support of their Member State to establish, or participate in, ERN. The process for the UK is set out here: European Reference Networks – Guidance on the recognition of Healthcare Providers and UK Oversight of Applications.
Healthcare providers should use the template at Annex 1 to notify RDAG of their intention to join an ERN. The template should be completed and sent to firstname.lastname@example.org. This address should also be used for any queries about the notification process or the healthcare provider recognition criteria.
As of July 2016 the list of ERN applications which have been endorsed by the Rare Diseases Advisory Group (RDAG) is now available.
The European Union have now approved a number of UK providers to become part of the networks. This list provides the detail of all the UK endorsed ERN centres and the UK co-ordinating centres.