Rare Diseases Framework brings 4 UK nations together to improve care and diagnosis

3 mins read

Monday 18 January 2021

Last week the government published a new UK Rare Diseases Framework setting out the key priorities for rare diseases in the UK over the next five years.

The framework creates a vision for the future which is shared by all four UK nations to help addresses key concerns of families and patients living with rare conditions. It was developed following  consultations with patients, carers and health professionals and builds on the UK strategy for Rare Diseases.

The four priorities outlined in the framework are:

• Helping patients get a final diagnosis faster
• Increasing awareness of rare conditions among health professionals
• Better coordination of care
• Improving access to specialist care, treatments and drugs.

These priorities are also supported by underpinning themes which include patient voice, national and international collaboration, pioneering research, digital, data and technology and wider policy alignment.

Contact’s rare conditions information officer, Rachel Gibson says: “1 in 17 people in the UK will be affected by a rare condition at some stage of their life – that’s around 3.5 million people, three quarters of whom are children. However, a significant proportion of these still don’t have access to adequate treatment and care.

“The new Framework is a welcome positive step and represents a commitment from the all four UK nations to deliver a shared vision for families living with rare conditions.”

The next stage will see the four nations producing Actions Plans showing how the priorities can be delivered in practice.

Find out more about rare conditions

We have lots of information about rare conditions on our website.

Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.

You can also read all about diagnosis, including the support available for children who don’t have a diagnosis. Getting a diagnosis can be difficult for children with rare conditions, but they are still entitled to social services needs assessments, support in education and certain benefits like Disability Living Allowance, which don’t require a diagnosis to be paid.

Contact’s work with local groups supporting parent carers who care for a child with a rare condition

We’ve recently been able to award 67 local groups with grants of up to £15,000 each so they can continue providing vital support to families who care for children with rare conditions and additional needs  – more important than ever during the pandemic. The grants have been made possible thanks to a match-funding partnership between Pears Foundation and the Department for Digital, Culture, Media and Sport (DCMS). The funding forms part of the Government’s £750m emergency Covid-19 funding charities package.