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