A manifesto for rare diseases?

Rare conditions affect over 3.5 million people living in the UK. There are around 7000 rare conditions, with new conditions regularly identified through scientific progress identifying the genetic causes of rare conditions. Collectively rare conditions are a serious health challenge to the NHS, but you probably won't hear much about them from the major political parties in the run up to the UK General Election.

With less than two weeks to go before the polls open, all major parties have now published their manifestos. The cost of living crisis, the economy, and immigration may be stealing the headlines, but health and the state of the NHS are prominent battle areas too. One area of consensus across all major party manifestos is that the NHS is in desperate need of investment and modernisation.

As a result, manifestos are promising broad and wide ranging commitments to rebuilding the NHS. The Conservatives are promising investment in the workforce and a long-term workforce plan. Labour have pledged investment in artificial intelligence (AI) technologies and a 'Fit for the Future' fund to double the number of CT and MRI scanners, to aid earlier diagnosis. The Liberal Democrats have pledged investment in public health and GP services, while the SNP pledge to campaign for a boost to NHS England funding by at least £16bn each year (which in turn will provide an extra £1.6bn to NHS Scotland).

What is missing however, is a new commitment from any of the major parties to improving services for people with rare conditions and an explicit pledge to build on the existing UK Rare Diseases Framework (see BioNews 1229). While the Conservative party has pledged to 'take forward' the English Rare Disease Action Plan in their manifesto, it is worth noting that this Plan has already been launched and sets out a 12 month plan for delivery, ending in February 2025.

UK Rare Diseases Framework

The UK Rare Diseases Framework was published just over a year after the last UK election. The Framework itself was somewhat of a cross-party effort, co-signed by the health ministers of each nation, with national Action Plans driven forward by the Conservative government in Westminster, Labour government in the Senedd, Scottish National Party government in Holyrood and the Democratic Unionist Party and Sinn Fein in Stormont.

Given the cross-party support for the Framework, it is all the more disappointing that there is not a clear commitment within party manifestos to continue its work.

Cross-border collaboration between each nation's civil service has facilitated the sharing of best practice and helped the Framework to successfully deliver on some of its ambitions.

Progress has not come easily. Each nation has seen progress limited by a lack of dedicated funding, limited resources and post-pandemic pressures on the NHS limiting the implementation of new initiatives and services.

These challenges will still exist on 5 July, and with manifestos omitting continued support for rare conditions and developing the UK Rare Diseases Framework, there will be an additional challenge of ensuring rare conditions remain a priority for the government.

It is vital that new MPs, whether they are in government or in opposition, have an understanding and awareness of the unique challenges faced by people living with rare conditions. We must ensure that the steps taken by the new government to rebuild and reinvigorate our NHS are informed by people living with rare conditions and the organisations and healthcare professionals that support them.

A Manifesto for rare diseases

A 'Manifesto for rare diseases' has been developed by Genetic Alliance UK, the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK and the Specialised Healthcare Alliance, 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 all genetic, rare and undiagnosed conditions.

These conditions can be difficult to diagnose, challenging to treat, and complicated to care for. In recent years, scientific developments have deepened our understanding of rare conditions and led to advancements that offer hope of improved outcomes. Exciting innovations such as AI-driven diagnostics, genomic testing, cell and gene therapies, and digital care support could help to address the inequalities that people living with rare conditions face.

This will only be possible through genuine partnership between the government, NHS, affected individuals, charities, and innovators, to unblock the barriers that are holding back progress. Strong political leadership is required to set clear expectations, ensure that all parts of the system work together, and provide the resources needed to deliver change.

The next government must take steps to build on the progress that has been made to date through initiatives such as the UK Rare Disease Framework. Delivering on the ambitions set out in the Framework could improve the lives of millions of people by delivering faster diagnosis, better coordinated care, more awareness among healthcare professionals, and improved access to specialist care and treatment.

Join the Campaign: Pledge for People with Genetic, Rare and Undiagnosed Conditions

This General Election is an opportunity for Genetic Alliance UK, and our community, to raise the profile of rare conditions with prospective parliamentary candidates and ensure the next cohort of MPs advocate effectively for the one in 17 people who will be affected by a rare condition in the UK.

Genetic Alliance UK's Pledge for People with Genetic, Rare and Undiagnosed Conditions campaign calls on all candidates to pledge the following.

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.

This campaign is not just for people living with genetic, rare and undiagnosed conditions. It's for everyone who wants to see progress. We need your help to get a pre-election commitment from candidates in your constituency. 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.

Visit our General Election Hub to read more about Genetic Alliance UK's #PLEDGE4GRU campaign and download our toolkit for contacting prospective parliamentary candidates or find out more by emailing pledge4gru@geneticalliance.org.uk