Rare Disease UK’s Patient Empowerment Group (PEG) is a collective of patient representatives who volunteer their time and expertise to help monitor and progress the implementation of the UK Strategy for Rare Diseases.
The Department of Health and Social Care and its arm’s-length bodies consult PEG to ensure that the rare disease patient community is informed and effectively represented in the implementation of the UK Strategy for Rare Diseases. As part of this, PEG is used as a sounding board for Public Health England as it develops the National Congenital Anomaly and Rare Disease Registration Service — providing comment and feedback into materials developed for patients and their families.
PEG has been the driving force behind much of the Rare Disease UK campaign’s work and successes in implementing the UK Strategy for Rare Diseases.
Read about the work of PEG in more detail here:
PEG consists of patient representatives from both Rare Disease UK supporters and and Genetic Alliance UK members:
Please note that we are currently inviting patient representatives interested in joining PEG to submit their expression of interest. If you are interested in being involved, please share your expression of interest by emailing Sarah with a short paragraph about your current role and experience. The deadline for applications Friday 24 May.