Our Work

Patient Empowerment Group

Last Reviewed 10/05/2016

The Patient Empowerment Group (PEG) was established by Rare Disease UK (RDUK) to help monitor the implementation of the UK Strategy for Rare Diseases. The purpose of the group is to ensure that the patient voice is properly informed and effectively represented in the implementation of the UK Strategy for Rare Diseases. 

PEG also works in partnership with Public Health England to provide the patient view in the development of the National Congenital Anomaly and Rare Disease Registration Service

About the Patient Empowerment Group 

PEG consists of patient representatives from RDUK and Genetic Alliance UK's membership, and includes a wide range of rare and genetic conditions. 

The group is chaired by Nick Meade, Director of Policy at Genetic Alliance UK. Nick is a patient representative on the UK Rare Disease Forum.

The role of the Patient Empowerment Group

  • PEG provides a patient and carer perspective to the discussions and development of the implementation of the UK Strategy for Rare Diseases.
  • The group utilises the Chair of PEG's position on the UK Rare Disease Forum to raise issues most important to patients and carers.
  • To ensure the patient voice is heard we actively campaign and lobby on issues that members feel are necessary.

Background 

The UK Strategy for Rare Diseases was published on 22 November 2013. The Ministerial foreword to the Strategy said that the UK Rare Diseases Stakeholder Forum, first established in 2012 to help develop the Strategy, will continue to work with the four countries of the UK to monitor the implementation of the Strategy.

Nick Meade, Director of Policy, was selected as the patient representative on the UK Rare Disease Forum. 

Please note that the Rare Disease UK Patient Empowerment Group is an entirely separate group to the UK Rare Disease Forum. For further information please refer to the Patient Empowerment Group's Terms of Reference

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