Your help is needed!
AGSD-UK is supporting the initiative by Genetic Alliance UK and Wales Gene Park to establish a Cross-Party Group in the Welsh Assembly to support patients with rare, genetic and undiagnosed genetic conditions.
Cross-Party Groups (CPGs) provide an opportunity for politicians and members of the public to meet and discuss a shared interest in a particular cause or subject.
Jane Lewthwaite, AGSD-UK’s Specialist Care Advisor – Pompe, said:
I am keen that our members make contact with their AMs and seek representation, so that GSDs have a voice in the Assembly.
Write to your AM
In order to get the group established, we need your support – please write to your local Assembly Member inviting them to join the group.
The Policy & Engagement Manager for Genetic Alliance, Emma, would be more than happy to join you to meet your AM and explain more about setting up the group. In order for this to happen, we need you to make contact with them in the first instance explaining why this is important to you.
If you make contact with the Assembly or write to your AM, please let Jane Lewthwaite know. Many thanks.
For any more information or support with the campaign, please email Emma Hughes at Genetic Alliance.
Photo: The Senedd of the Welsh Assembly, Cardiff.