A ‘Manifesto for rare diseases’ ahead of coming General Election

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 to build on our momentum from Rare Disease Day last month, the manifesto sets our ambitions that will support people living with rare, genetic 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.

  • Figures from the UK Rare Diseases Framework

  • 1 in 2000

    A rare condition is a one that affects less than 1 in 2000 people

  • 7000 +

    recognised rare conditions

  • 1 in 17

    people in the UK will be affected by a rare condition at some point in their lifetime

Genetic Alliance UK and the SHCA have come together ahead of the General Election to develop a joint manifesto for people with rare conditions. While they are individually rare, collectively rare conditions are common – 1 in 17 people are affected, equating to 3.5 million in the UK alone.

People with rare conditions face significant challenges – rare conditions can be difficult to treat and complicated to care for. However, scientific progress offers hope for the individuals affected and for their families. For example, developments in genetic testing and treatment could help to improve the lives of many people with life-limiting and life-threatening illnesses.

This will only be possible through genuine partnership between the government, NHS, patients, charities, and innovators, to unblock the barriers that are holding back progress.

We are therefore calling on the next government to commit to building on the current UK Rare Diseases Framework by setting new ambitions for improving the lives of people with rare diseases over the next five years.

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.

Support our work

In the run-up to the next General Election, help us continue our vital work to advocate for the 3.5 million people in the UK living with lifelong and complex genetic, rare and undiagnosed conditions