Cross Party Group

Rare, Genetic and Undiagnosed Conditions - Fifth Senedd

Description

This Cross Party Group was dissolved at the end of the Fifth Senedd (April 2021).

 

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

 

Purpose

 

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

 

Office-holders

 

Chair: Angela Burns MS

 

Secretary: Emma Hughes, Genetic Alliance UK



Cross Party Group Documentation

The Minutes for each meeting, and Annual Reports and Financial Statement can be found here:

Cross-Party Group Documentation

 

Members

  • 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