National Recognition for Wales Digital Rare Care Centre

Last night, our team were finalists at the HSJ Digital Awards - a ceremony celebrating the most innovative and transformative digital projects and teams across the NHS. 

The Digital Rare Care Centre, powered by CareCircle transforms Rare Disease care by providing an online platform for use of patients and staff across Wales. Turning what can often feel like fragmented care into an integrated, person-centred model that empowers patients with knowledge and confidence to be able to actively engage in their own health journeys.

Living with a Rare Disease can feel isolating and confusing, and treatment pathways can often feel overwhelming especially when faced with multiple referrals for different services, it is easy to feel that you are alone.

The Digital Rare Care Centre seeks to remove those feelings of doubt and confusion by combining knowledge with support, replacing isolation with engagement - to build a community of individuals sharing lived experience, providing peer support and trading knowledge to manoeuvre their care journeys with confidence. The platform’s remit doesn’t just stop at health – it also serves as a one-stop point of access for patients and their families/carers, providing a plethora of carefully curated, expert guidance and support around wellbeing, education, financial signposting and other aspects of day-to-day life that could be impacted by a person’s experience of Rare Disease.

The platform also supports Healthcare Professionals, by providing tailored education and resources to enhance awareness and confidence in delivering consistent, person-centred care to patients. With content made easily accessible for all professionals both inside and outside of the health care system, encouraging collaborative approaches and peer support amongst multiple disciplinaries across all regions of Wales, including specialists.

Europe’s first ever Rare Disease Consultant Nurse, Rhiannon Edwards, at AWMGS said;

“I am proud to represent Wales as the first Rare Disease Consultant Nurse in Europe, showing that the All-Wales Medical Genomics Service is passionate and driven to support new ways of working to support the 180,000 individuals in Wales and their families impacted by rare diseases. Together we are leading the way to support transformation of care and support to those impacted with these conditions, using digital tools such as patient passports, health trackers and safe and ethical AI. Alongside support for care coordination and building peer-to-peer communities, we aim to bring awareness, training and support across health and social care, education and welfare to improve the experiences of families and those that support them in all life circumstances.”

Supported through the Bevan Commission Exemplar Programme and developed through a collaboration between individuals with lived experience and Cardiff and Vale University Health Board – AWMGS, the Rare Care Centre is powered by CareCircle, a leading-edge technology for delivering co-ordinated care and support.

Laura MacDonald, Chief Partnerships Officer for CareCircle said:

“We are thrilled that the Digital Rare Care Centre has again been recognised. Rare diseases have long been overlooked and underserved around the world because they are complex problems to solve. The Wales team has faced that challenge head on, and Carecircle’s technology has helped turn the vision of coordinated, person-centred care — even where needs are complex — into a reality.

Carecircle enables a system where people are more empowered in their own healthcare, where they are seen as whole people rather than a collection of symptoms or needs, and where their personal data is properly protected. The Carecircle-powered Rare Care Centre has the potential to become a blueprint for responsive, individualised care, and it is already attracting significant international interest — for rare diseases and beyond.

We would love to see this model expanded across the four nations, so that the 3.5 million families in the UK affected by rare disease can benefit from better care coordination, access to relevant and safe information, and connection to communities that help reduce isolation. Crucially, this is not only better for families; it also creates measurable efficiencies for the NHS by reducing repetition, duplication and waste, with modelling indicating huge potential savings. That means resources can be redirected to where they deliver the greatest impact.

It is a great honour to work with stakeholders across Wales — from professionals and families to those directly affected — and we are committed to building on this success and driving real change in healthcare.”

Having already achieved so much in such a short space of time since its beginning, it is a huge achievement to be recognised yet again by the HSJ Digital Awards and we have no doubt that the momentum of this recognition will further propel the Digital Rare Care Centre and Wales to the forefront of the genomic landscape – improving patient and staff outcomes across the board.