UK Rare Diseases Framework

Patient voice opportunities

The Department of Health and Social Care are recruiting for voices of people living with rare condition to influence the delivery of the UK Rare Diseases Framework.

Roles for recruitment

There is a place on the UK Rare Diseases Framework Board, which will provide oversight and coordination of rare disease policy and action plans across the four UK nations. The application pack is HERE, and the application form is HERE. Genetic Alliance UK will be represented on the UK Rare Diseases Framework Board.

There are two places on the UK Rare Diseases Delivery Group for England, which will develop and monitor implementation of the England Action Plan. The application pack is HERE, and the application form is HERE


The role requirements and responsibilities are different and described in detail in the recruitment packs. The deadline for applications is 2 June 2021. If you have any questions, you may email: [email protected]

Future roles

As these packs describe, there will be further opportunity for the involvement of people living with rare conditions in the UK Rare Diseases Forum. Places on this will be recruited for in the future.

Share please

Please share this opportunity with anyone you think would be able to advocate for the broad community of people living with a rare condition. If you would like to be on our mailing lists, so that you receive emails about opportunities like these, please sign up HERE.

Future support

Genetic Alliance UK, and the Rare Disease UK campaign are committed to support and work with all patient and public involvement post holders in the implementation of the new framework, successful candidates will be offered a place on the Rare Disease UK Patient Empowerment Group, and supported to network with the community.

Remember to vote for your favourite...