Call for Evidence

Rare Diseases UK

Rare Disease UK is gathering information to examine the implementation of the UK Strategy for Rare Diseases in England. This work is being carried out on behalf of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions.

The aim of the UK Strategy for Rare Diseases is to ‘ensure no one gets left behind just because they have a rare disease’.

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 our 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.

If you are a patient, family member or carer affected by a rare disease, please read this guidance for submitting written evidence. We also welcome input from other stakeholders in the rare disease community, including patient representatives and academics. Please see this guidance for more information.

The deadline for evidence submission is 2 January 2016. Submissions should be made to appg@geneticalliance.org.uk with the subject line ‘call for evidence’.

More information about the APPG on Rare, Genetic and Undiagnosed Conditions can be found here. A list of the 51 commitments is available here. The UK Strategy for Rare Diseases can be viewed here. If you require further assistance please contact Rosie Collington, Public Affairs Assistant, at Genetic Alliance UK.

We look forward to hearing from you.

Rare Disease UK is a campaign of Genetic Alliance UK. the national charity of over 180 patient organisations, supporting all those affected by genetic conditions.

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