Members of the Cross Party Group (CPG) for Rare, Genetic and Undiagnosed Conditions met for the second time in the National Assembly for Wales on January 14th to discuss the report recently launched by Genetic Alliance UK, ‘Action for Access’. The meeting was attended by representatives from the rare disease community including member organisations, the Cystic Fibrosis Trust and the National Society for Phenylketonuria (PKU), and 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 PKU and access to Kuvan on behalf of the patient community and will request a short debate in the Assembly to highlight these experiences. Genetic Alliance UK, the Secretariat, will meet with the Chair to further discuss recommendations in the report and how these can be taken forward.
Plans for CPG meetings in 2020/2021 are currently in development but the next engagement session in the Senedd will be for Rare Disease Day 2020 so please do come along to the parliamentary reception on 25th February to hear more about what the CPG has achieved since it was established in October and plans going forward. Register for the Rare Disease Day 2020 Senedd Reception via Eventbrite
Please get in touch with Policy & Engagement Manager (Wales), Emma Hughes for more information about the Cross Party Group in Wales – firstname.lastname@example.org