Patient Empowerment Group

Rare Disease UK’s Patient Empowerment Group (PEG) is an important collective of people in the genetic, rare and undiagnosed community who play a vital role in monitoring and progressing the implementation of the UK Rare Diseases Framework

PEG is fully independent and ensures that people affected by genetic, rare and undiagnosed conditions remain at the heart of policy development. Through the group, the Departments for Health and their arm’s-length bodies in each UK nation are held to account on their commitments in the Framework. These bodies also consult PEG to ensure that the rare condition community is informed and effectively represented in policy development.


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England Rare Disease Action Plan Patient Advisory Group (PAG)

Genetic Alliance UK has worked with the Rare Disease Team at the Department for Health and Social Care to establish the England Rare Disease Action Plan Patient Advisory Group. This group amplifies the voice of people with lived experience of rare, genetic and undiagnosed conditions and provides feedback on drafts of England’s Rare Diseases Action Plans. The products from the group are considered by the England Rare Diseases Framework Delivery Group when renewing the action plan.

Outputs of the group 

PAG Terms of reference