Cross Party Group

Rare, Genetic and Undiagnosed Conditions - Fifth Senedd




The Cross-party Group on Rare, Genetic and Undiagnosed Conditions




To increase awareness of rare, genetic and undiagnosed conditions in the assembly and help ensure that patients and families affected by these conditions have access to appropriate care and support




Chair: Angela Burns AM


Secretary: Emma Hughes, Genetic Alliance UK

Next meeting


Date: Wednesday 25 March 2020


Time: Committee Room 4 & Viewing Gallery


Location: 12.30-13.30


Next meeting


Date: Tuesday 23 June 2020


Time: Conference Room B


Location: 12.30-13.30


Cross-Party Group Documentation:


Minutes of previous meetings


Annual Reports and Financial Statements


  • Angela Burns MS
  • Mike Hedges MS
  • Helen Mary Jones MS
  • Emma Hughes - Genetic Alliance UK
  • Menai Owen-Jones - Pituitary Foundation
  • Professor Angus Clarke - All Wales Medical Genomics Service
  • Profesor Meena Upadhyaya - Ethnic Minority Women in Welsh Healthcare
  • Professor Julian Sampson - Cardiff & Vale UHB
  • Joanne Ferris - Association of the British Pharmaceutical Industry (ABPI)
  • Sondra Butterworth - Patient representing Thalassaemia / Researcher
  • Angie Contestabile - SENSE
  • Dr Karen Reed - Wales Gene Park
  • Lucia Elghali - Carer representing Fragile X Syndrome
  • Marie James - Carer representing tuberous sclerosis
  • Dr. Graham Shortland - Rare Disease Implementation Group / Consultant Paediatrician
  • Faith Walker - Cardiff Friends of SIckle Cell & Thalassaemia
  • Martin Williams - SWAN UK