Advocating for the rare disease community in Wales
Wales Gene Park, through its close work with Genetic Alliance UK, advocates on issues affecting the rare disease community and is involved in ongoing campaigns and policy work to make progress in these areas. This includes highlighting where improvements are needed in accessing testing, service, and treatments through working with patients, families and patient organisations.
The current focus in Wales involves representing stakeholders’ interests in the development and implementation of a new UK Framework for Rare Diseases and ensuring the Welsh Government develops an appropriate action plan to implement priorities. This plan must ensure that patients and families living with rare diseases have equitable access to effective testing, services, treatment and research opportunities.
As a member of the Programme Board for the Genomics for Precision Medicine Strategy, Wales Gene Park provides oversight from the patient perspective and are supporting the involvement of patient and public members through the establishment of a Patient & Public Sounding Board.
Establishing a Cross-Party Group for Rare, Genetic & Undiagnosed Conditions, chaired by Angela Burns MS, has provided a platform to inform Members of the Senedd about key issues affecting the rare, genetic and undiagnosed community.