Members of the Cross Party Group (CPG) for Rare, Genetic and Undiagnosed Conditions met for the second time in the National Assembly for Wales last week to discuss the Action for Access report we recently launched.
The meeting was attended by representatives from the rare disease community including member organisations, the Cystic Fibrosis Trust and the National Society for Phenylketonuria. Presentations included case studies from the report about difficulties accessing medicines for those patient communities.
Angela Burns AM, Chair of the CPG, was keen to take forward the issue of raising awareness of phenylketonuria (PKU) and access to sapropterin (Kuvan) on behalf of the patient community and will request a short debate in the Assembly to highlight these experiences.
Plans for CPG meetings in 2020/2021 are currently in development but our next engagement session in the Senedd will be for Rare Disease Day 2020. Please join us at the reception on 25 February 2020 to hear more about what the CPG has achieved since it was established in October 2019 and plans going forward.
Click here to read our Action for Access report.
For more information about the Cross Party Group in Wales please get in touch with our Policy and Engagement Manager (Wales), Emma Hughes, at [email protected]
Members of the National Society for Phenylketonuria community supporting our Action for Access Campaign at the meeting of the Cross Party Group on Rare, Genetic and Undiagnosed Conditions.