The UK’s Department of Health and Social Care (DHSC) has published its ‘UK Rare Disease Framework’, which will aim to continuously improve the lives of people living with rare diseases.
Despite rare diseases being individually uncommon, it is currently estimated that there are over 7,000 rare disease, with new conditions being identified as research advances.
Currently, 1 in 17 people will be affected by a rare disease at some point during their lifetime.
The framework identifies four key priorities for rare diseases care and diagnosis to be addressed over the next five years, which includes:
- Helping patients get a final diagnosis faster
- Increase awareness of rare disease among healthcare professionals
- Supporting better coordination of care
- Improving access to specialist care, treatment and drugs.
The framework will seek to work with the four nations of the UK to improve patient care for people living with rare diseases, building on the prior commitments made in the UK Strategy for Rare Diseases.
The four key priorities are also supported by further ‘underpinning themes’, which are identified as: patient voice; national and international collaboration; pioneering research; digital, data and technology; and wider policy alignment.
“We welcome the publication of the UK Rare Diseases Framework and look forward to working with the four nations of the UK to help to deliver its aims,” said Nick Meade, Genetic Alliance UK – part of Rare Disease UK.
“This is once again an almost unique piece of health policy in that it represents a commitment from four health ministers from across the UK to deliver a shared aim for people living with rare conditions,” he added.
Following the publication of the new framework, the four nations of the UK will now develop action plans to identify how they will address the four key priorities laid out above.
These action plans will be published, where possible, in 2021, according to the UK Rare Disease Framework document.
