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Government Releases 2023 Rare Disease Action Plan

Last year, the government published the first-ever Rare Diseases Action Plan for England. It set out to ensure that those living with rare diseases in England receive the best possible care and to improve accurate diagnoses for patients suffering from unknown diseases.

The government have now followed up that action plan with a 2023 version which will help these patients further by providing them with better support and more access to testing. The overall aims of the action plan are to follow up on the four key priorities that were outlined in the UK Rare Diseases Framework published in 2021. They are as follows:

  • Help patients get a final diagnosis faster.
  • Increase awareness among healthcare professionals.
  • Better coordination of care.
  • Improve access to specialist care, treatment and drugs.

The action plan published today lists 13 new actions that have been developed with members of the rare diseases community. Each action should help make strides in all of the above four areas.

As the name suggests, each individual rare disease is far from common. However, collectively, one in 17 people in the United Kingdom will be affected by a rare disease at some point in their lives. The new action plan sets out how healthcare professionals will increase data-sharing so that patients can get a diagnosis faster.

Following up on last year’s plan

The new plan shouldn’t be seen as a revision of last year’s but rather a follow-up. The work undertaken in the last year has been substantial including:

  • Improvements to newborn screening for rare diseases,
  • Making over 1000 new diagnoses thanks to advances in genomic research,
  • Creating a toolkit for virtual healthcare consultations so that people who don’t live near any specialists can still receive the best care possible,
  • Launching the Innovative Medicines Fund (IMF) to fast-track cutting-edge medicines to patients with rare diseases.

The government isn’t happy to just stop there, though, which is why the new action plan sets out to do even more.

They are going to put more money into research, after giving £13 million to the MCR-NIHR UK Rare Disease Research Platform and £790 million to the NIHR Biomedical Research Centres.  This funding will help massively when it comes to understanding and accelerating diagnoses and therapies.

The hope is that this funding will pay off in the long term so that the 3.5 million people living with rare diseases in the UK can have a far better quality of life.

A well-received plan

Upon publishing the action plan, Health Minister Helen Whately said:

“Rare diseases are individually rare but collectively common, affecting 3.5 people in the UK. We’ve made huge progress in the last year, making 1,000 complex new diagnoses thanks to advances in genomic research.

But there is still more to do. Our Rare Diseases Action Plan will reduce health inequalities, help people participate in research and join up specialist service better for patients.”

Kerry Leeson-Beever, the Chief Executive of Alstrom Syndrom UK and Breaking Down Barriers is also positive about the new plan and has praised the government for engaging with organisations like hers before putting it together. She said:

“It has been a privilege to continue working with the England Rare Disease’s Framework Delivery Group as a patient representative. I have been impressed with the effort the Department of Health and Social Care (DHSC) has made to engage with the rare disease community at different stages throughout the development of the plan.

While there is clearly more work to be done, I welcome the progress that has been made and the new proposed actions. I look forward to working with the delivery group in the year ahead to monitor these actions and to identify areas for further development as we work towards ensuring that all people affected by rare conditions have access to appropriate care & support.”

Final thought

This newly published action plan should be welcomed by all. It is clear in what it wants to achieve and the steps that need to be taken to get there. It also has pedigree and goodwill behind it after the successes of the last year.

The news will be of particular interest to Curia’s NHS Innovation and Life Sciences Commission. The group, co-chaired by Lord O’Shaughnessy and Professor Mike Bewick, are working to ensure that policies like the ones outlined in the Rare Diseases Action Plan are viable in practice.

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