- Genetic Alliance UK /
- 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 are in the process of setting up the Secretariat to the Cross Party Group on Rare, Genetic and Undiagnosed conditions in The National Assembly for Wales
We need your help
In order to ensure those affected by rare, genetic and undiagnosed conditions get access to the right care and treatment we need your help. Please write to your Assembly Member and ask them to pledge their support to the establishment of a Cross Party Group for Rare, Genetic and Undiagnosed Conditions in the National Assembly for Wales.
- To find a list of your constituency and regional Assembly Members, please follow this link.
- There is also a search function that can be used to find the AM that represents your area. Click here.
- We have provided a template letter which can be adapted to include your personal experience and setting out why the establishment of a CPG could benefit you – you can download the letter here. Please do also copy us in to your emails so we can follow up with your AM about taking part in the CPG, [email protected]
Please do lend your support to the campaign so that we can ensure that patients and families in Wales receive improved access to information, support and care for their condition.
The CPG will provide a platform for us to escalate issues affecting our community and to ensure that they are scrutinised by government.
For further information about the establishment of the CPG in Wales, please contact Emma Hughes, Policy & Engagement Manager (Wales) – [email protected]