Working with Parliament

An open letter to the new Government

Genetic Alliance UK has published an open letter calling on the new government to commit to building on the current UK Rare Diseases Framework by setting new ambitions for improving the lives of people with rare conditions over the next five years.

The open letter is based on the calls from our Manifesto for Rare Diseases which advocates for policy changes that could:

• Help patients get a timely diagnosis
• Increase awareness among healthcare professionals
• Improve the coordination of care
• Increase access to specialised care, treatment and drugs

Help us secure champions for genetic, rare and undiagnosed conditions in Westminster

Genetic Alliance UK are embarking on an ambitious campaign to build a network of MP champions for genetic, rare and undiagnosed conditions in Westminster. 

We will be undertaking a contact campaign to ensure Members of Parliament and their teams are aware of genetic, rare and undiagnosed conditions and that they have the information they need to support people with these conditions living in their constituency. 

We need your help to encourage your local MP to take an interest in genetic, rare and undiagnosed conditions and support the work of Genetic Alliance UK. Our community is most powerful when we come together and the more people who contact a MP, the more likely they are to support people with genetic, rare and undiagnosed conditions.

You can help by: 

• Sharing our Open Letter to the new Government on your social media and tagging your local MP.
• Using our email template to write to your local MP and encourage them to support people with genetic, rare and undiagnosed conditions. 
• Letting Genetic Alliance UK know if your local MP has supported you, or shown interest in genetic, rare and undiagnosed conditions. 

Not sure who your MP is? Find out who represents you in Westminster.

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.