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

2021 meetings summary – UK Rare Diseases Framework

Membership of the Patient Empowerment Group

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

  • Allison Watson, ring 20 research and support UK
  • Amanda Mortensen, Batten Disease Family Association
  • Bob Stevens, MPS Society
  • Bobby Ancil, Muscular Dystrophy UK
  • Emma Hughes, Genetic Alliance UK
  • Emma Kinloch, Salivary Gland Cancer UK
  • Farhana Ali (Secretariat), Genetic Alliance UK
  • Georgina Morton, ArchAngel MLD Trust
  • Heather Delaney, Fibrous Dysplasia Support Society UK
  • Helen Santini, Huntington’s Disease Association
  • Jane Swainson, Relapsing Polychondritis Awareness and Support
  • Jess Hobart
  • Jo Balfour, Cambridge Rare Disease Network
  • Karen Harrison, Alex – The Leukodystrophy Charity
  • Kate Learoyds, NSPKU
  • Kerry Leeson-Beevers, Alström Syndrome UK
  • Kye Gbangbola, Sickle Cell Society
  • Laura Szutowicz, HAE UK
  • Louise James, SWAN UK parent representative
  • Lynsey Beswick, Cystic Fibrosis Trust
  • Marie Pritchard, SWAN UK
  • Maxine Tapp, PSC Support
  • Natalie Frankish, Genetic Alliance UK
  • Nick Meade (Chair), Genetic Alliance UK
  • Nigel Over, The Smith-Magenis Syndrome (SMS) Foundation UK
  • Pat Roberts, ArchAngel MLD Trust
  • Phillipa Farrant, Duchenne Family Support Group
  • Rhoda Walker, Northern Ireland Rare Disease Partnership
  • Rick Thompson, Findacure
  • Roanna Maharaj, UKTS
  • Rob Burley, Muscular Dystrophy UK
  • Ruth Abuzaid, Huntington’s Disease Association
  • Sarah Wynn, Unique
  • Shelly Simmonds, Action Duchenne
  • Sondra Butterworth, patient representative
  • Sophie Peet, Genetic Alliance UK
  • Sue Farrington, Scleroderma & Raynaud’s UK
  • Sue Millman, Ataxia UK
  • Toni Mathieson, Niemann-Pick UK
  • Tony Thornburn, Behçet’s UK

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