UK Strategy for Rare Diseases

Date: Tue 13th December 2016

The publication of the UK Strategy for Rare Diseases in 2013, represented a landmark for patients with rare diseases. It is the first time all four health departments of the UK have come together to recognise and respond to the needs of all those affected by rare diseases. The aim of the Strategy is to 'ensure no one gets left behind just because they have a rare disease'.

In the UK it is estimated that 3.5 million people will be affected by a rare disease at some point in their lives. Despite the scale of the issue, a significant proportion of these patients do not have access to the right care and treatment.

There are many examples of excellent practice for those with rare diseases throughout the UK, but unfortunately these are more often the exception rather than the rule.

The Strategy contains 51 commitments to ensure that health and social care systems across the four nations provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK.

Key Features Of The Strategy

  • A clear personal care plan for every patient that brings together health and care services.
  • Making sure patients, their families and carers have the information they need, are listened to and consulted.
  • Developing better methods of identifying and preventing rare diseases.
  • Improving diagnosis and earlier intervention for those with a rare disease.
  • Better education and training for health and social care professionals.
  • Building on research to improve personalised approaches to healthcare for those with a rare disease.

What's Happening Now?

The four countries of the UK have until 2020 to implement the 51 commitments in the UK Strategy for Rare Diseases. There has been differing levels of implementation in each nation:

  • Patient Empowerment Group calls for coordination in England
  • Reconfiguration of UK Rare Disease Forum
  • First meeting of the Welsh Rare Disease Implementation Group
  • Rare Disease Implementation Plan for Northern Ireland launched

Supporting the UK Strategy

The UK Strategy for Rare Diseases presents a landmark for patients with rare diseases. It is the first time all four health departments of the UK have come together to respond to the needs of all those affected by rare diseases. The four countries of the UK have until 2020 to implement the 51 commitments outlined in the Strategy.

In order to help put these into action, each country agreed to develop its own implementation plan by February 2014. The departments of health in Scotland, Wales and Northern Ireland have all published country specific plans that reflect their respective health service structures and priorities. The Department of Health in England has not developed or coordinated a plan for England.

To support the investigation into why this is the case and how it affects patients in England, we need to hear from everyone affected by rare diseases – that includes patients, family members and carers.

A survey has been produced by Genetic Alliance to capture information on what it is like for a patient with a rare disease to navigate the NHS system and what information and support is given.

We want to ensure that people affected by Scleroderma are represented and so please consider completing the survey by the 2nd January 2017. Alternatively, you e-mail your responses to the questions in the survey to appg@geneticalliance.org.uk with the subject line 'call for evidence'.

Complete the survey today.