The Welsh Assembly Cross-Party Group on Rare, Genetic and Undiagnosed Conditions
In the UK, 1 in 17 people will be affected by a rare disease at some point in their life: this amounts to approximately 150,000 people in Wales.
Patients and families frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support.
WHAT IS A CROSS-PARTY GROUP?
Cross-Party Groups (CPGs) provide an opportunity for Assembly Members (AMs) of all parties, outside organisations and members of the public to meet and discuss a shared interest in a particular cause or subject.
Genetic Alliance UK have recently set up the Secretariat to the Cross Party Group on Rare, Genetic and Undiagnosed conditions in The National Assembly for Wales
For further information about the CPG in Wales, please contact Emma Hughes, Policy and Engagement Manager (Wales), at [email protected]org.uk.