Rare Disease Policies (All UK)

Rare Disease Policies

United Kingdom

Following a European Union Council Recommendation on rare diseases, in 2012 the four countries of the UK jointly embarked on a consultation on plans to develop a UK Strategy for Rare Diseases.

The consultation outcomes informed the development of the UK Strategy, published in November 2013. To deliver the commitments in the Strategy, each of the four countries agreed to develop their own implementation plan to reflect local health system arrangements and plans for the delivery of improvements.


The Implementation Plan for Rare Diseases in Scotland aims to improve services for people living with a rare disease and their family members.

The plan describes the  excellent work already carried out across the NHS in Scotland, universities, enterprise, industry, social care and the third sector in supporting people with rare diseases and  sets out actions to make progress in priority areas. It acknowledges the importance of timely and accurate diagnosis to allow appropriate treatment to start and to give people with rare conditions and families access to support services.

This Scottish Plan underpins delivery of the UK Rare Disease Strategy, which in turn supports the drive in Europe to improve rare disease services.


The Welsh Government have published their Rare diseases implementation plan which sets out their expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live in Wales and whatever their circumstances. The plan has been developed in line with our support for the UK Strategy for Rare Diseases – a commitment to a patient centred, co-ordinated approach.  They have also published Delivering for patients with rare diseases: Implementing a strategy and a 2016 Annual Report of the Welsh Implementation Plan for Rare Diseases.

Northern Ireland

In Northern Ireland the government have published The Northern Ireland Implementation Plan for Rare Diseases to set out the commitment of the Department, the Health and Social Care sector, the voluntary sector, and education and research stakeholders to address the needs of people living with the impact of a rare disease regardless of their age, where they live and whatever their circumstances.