Genetic Alliance UK works in collaboration with and on behalf of its members across the UK to support high level change to improve the lives of people living with rare, genetic and undiagnosed conditions.
Working with Parliamentarians
We work with elected representatives to raise awareness of rare, genetic and undiagnosed conditions, their impact on people’s lives and the challenges that follow. Representatives who are informed on the issues around these conditions are empowered to raise their profile in parliament and encourage legislative change which reflects the needs of people affected by these conditions.
Parliamentarians in the Houses of Parliament, Scottish Parliament, Welsh Assembly and Northern Ireland Assembly support us in several ways. These include:
- meeting constituents with rare, genetic and undiagnosed conditions
- asking parliamentary questions on key issues concerning rare conditions
- speaking in debates on key issues to highlight rare conditions
- addressing key issues with the relevant Ministers and Government.
- supporting our cross party group activity
Genetic Alliance UK supports this work by:
- drafting parliamentary questions
- providing briefings ahead of meetings and debates which detail the rare disease community’s perspective on specific issues
- joining meetings with constituents and policy-makers
Cross Party Groups
The main way for any charity to work with parliamentarians is through cross party groups across the four nations. These are informal groups organised by parliamentarians for parliamentarians who have an interest in a specific topic area.
Genetic Alliance UK provides the secretariat for the Westminster All Party Parliamentary Group (APPG) and the Welsh and Scottish Cross Party Groups (CPGs) on rare, genetic and undiagnosed conditions. We bring together people affected by rare, genetic and undiagnosed conditions, patient group representatives, health care professionals, researchers and parliamentarians to discuss the challenges people living with rare, genetic and undiagnosed conditions face in the different nations. These groups allow parliamentarians to meet people affected by rare conditions and help to ground these discussions in the reality of their constituents.
More information on the Westminster All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions for Members of the Houses of Parliament.
More information on the Welsh Cross Party Group on Rare, Genetic and Undiagnosed Conditions for Members of the Senedd.
More information on the Scottish Cross Party Group on Rare, Genetic And Undiagnosed Conditions for Members of the Scottish Parliament.
Rare Disease Day
Each year the APPG and CPGs host parliamentary receptions for Rare Disease Day to raise awareness for rare conditions in parliament. The events are a chance to highlight the successes of the past year for rare conditions and set the aspirations for the year to come.
Northern Ireland All Party Group
Northern Ireland Rare Disease Partnership works with parliamentarians to raise the profile of rare conditions in the Northern Ireland Assembly.