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Cross Party Group

Rare, Genetic and Undiagnosed Conditions

Description

Description

 

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 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

Members

  • Angela Burns AM
  • Mike Hedges AM
  • Helen Mary Jones AM
  • 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

 

 

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