Rare Disease UK is gathering information to look at 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 their investigation into why this is the case and how it affects patients in England, they need to hear from everyone affected by rare diseases – that includes patients, family members and carers.

This survey is one way you can submit evidence to the inquiry. Alternatively, you e-mail your responses to the questions in the survey to appg@geneticalliance.org.uk with the subject line ‘call for evidence’

https://www.surveymonkey.co.uk/r/RareDiseasesEngland

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