Patient Empowerment Group

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:

March 2019 meeting

Membership of the Patient Empowerment Group

PEG consists of patient representatives from both Rare Disease UK supporters and and Genetic Alliance UK members:

  • Beverly Searle, Unique
  • Emma Hughes, Genetic Alliance UK
  • Farhana Ali (Secretariat), Genetic Alliance UK
  • Jane Swainson, Relapsing Polychondritis Awareness and Support
  • Jayne Spink, Genetic Alliance UK
  • Karen Harrison, Alex – The Leukodystrophy Charity
  • Kerry Leeson-Beevers, Alström Syndrome UK
  • Laura Szutowicz, HAE UK
  • Louise James, SWAN UK parent representative
  • Natalie Frankish, Genetic Alliance UK
  • Nick Meade (Chair), Genetic Alliance UK
  • Ruth Abuzaid, Huntington’s Disease Association
  • Shelly Simmonds, Action Duchenne
  • Sondra Butterworth, patient representative
  • Sue Millman, Ataxia UK

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