General Election 2024

Pledge for People with Genetic, Rare and Undiagnosed Conditions

The General Election will take place on 4 July 2024 and is an opportunity for Genetic Alliance UK, and our member organisations, to make their voices heard. 

We are delighted to announce the launch of our Pledge for People with Genetic, Rare and Undiagnosed Conditions campaign which will call on all candidates to say: 

If I am elected, I will support people living with genetic, rare and undiagnosed conditions by:

  • Helping people get a timely and accurate diagnosis 
  • Raising awareness of these conditions within the NHS
  • Ensuring people have access to coordinated care 
  • Improving access to specialist care and treatment

Our pledge is based on the calls outlined in our manifesto, developed with the Specialised Healthcare Alliance

We need your help to promote the campaign. Together, we can make sure that the next Government takes action to support the UK’s genetic, rare and undiagnosed community. 

Are you a prospective parliamentary candidate? Visit our candidate page and pledge your support here

We need your help to get a pre-election commitment from candidates in your constituency. We need them to promote the needs of people with genetic, rare and undiagnosed conditions in the form of our pledges. You can encourage their commitment by  sharing your story and your community’s stories with your local candidates.  Our community is most powerful when we come together and the more people who contact a candidate, the more likely they are to support people with genetic, rare and undiagnosed conditions. 

We have two toolkits to help when contacting prospective candidates and encouraging your community to get involved:

Questions? Contact us via [email protected]

Download our social media assets

Use our assets to tell your candidates to pledge their support for people living with genetic, rare and undiagnosed conditions

Manifesto

A ‘Manifesto for rare diseases’ has been shared with all of the main political parties thanks to partnership working between Genetic Alliance UK, the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK and the Specialised Healthcare Alliance (SHCA), a coalition of patient groups and corporate supporters who campaign on behalf of people with rare and complex conditions.

Although the headline focuses on rare diseases, the manifesto sets our ambitions that will support people living with genetic, rare and undiagnosed conditions. Genetic Alliance UK usually focuses our language on supporting people living with rare and/or genetic conditions – but policy in our space is often for ‘patients’ with ‘rare diseases’, and so we’ve used the ‘disease’ term here to match up with the flagship UK Rare Disease Framework policy.

The manifesto sets out our calls to action in more detail, including 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

The manifesto has been shared with health ministers and shadow ministers from the Conservatives, Labour, the Liberal Democrats, Plaid Cymru and the Scottish National Party. Together, we have asked all of the political parties to consider the UK’s genetic, rare and undiagnosed condition population in developing proposals for their manifestos ahead of the coming General Election.

Download the Manifesto here.

What does the General Election mean for organisations that support genetic, rare and undiagnosed conditions? 

General Elections can be an exciting period for organisations that campaign on behalf of people with genetic, rare and undiagnosed conditions. It is an opportunity to raise the profile of your organisation, the issues that your members face and call for candidates to support the changes that you are asking for. 

However, it is important to know that in the run up to the General Election, charities must only take part in political activity that supports their purpose and is in their best interests. Charities must also abide by the law when doing so.

The Charity Commission and National Council for Voluntary Organisations(NCVO) have produced useful guidance which you can access via the links below: