Wales Digital Rare Care Centre Recognised for Empowering Patients at the HSJ Digital Awards

The Digital Rare Care Centre, a world-first platform supporting people living with rare diseases, has been recognised as a finalist in the ‘Empowering Patients Through Digital’ category at the 2026 HSJ Digital Awards.

The ceremony, held on Tuesday 19 May at the ICC Birmingham, celebrates the NHS’ most innovative digital projects, teams and services that are improving patient experience, driving innovation and helping services respond to increasing demand.

The ‘Empowering Patients Through Digital’ award honours projects that successfully transition patients from passive recipients of care to active participants in managing their health and wellbeing. This includes supporting people to monitor their health, navigate healthcare systems and manage appointments more independently.

The Wales Digital Rare Care Centre was commended for providing a single point of access for people living with rare diseases, connecting them with health, social care, education, welfare and workplace services.

Supported through the Bevan Commission Exemplar Programme, the platform was developed in response to the significant challenges faced by the rare disease community. Limited awareness, fragmented care pathways and a lack of specialist support have often contributed to preventable harm, poorer outcomes and moral distress among clinicians.

Rare diseases affect one in 17 people, including around 180,000 people in Wales, 3.5 million across the UK and 300 million globally.

The Digital Rare Care Centre offers an integrated digital platform that brings together health, social care, education, welfare and workplace support in one place. By reducing the isolation often experienced by people living with rare diseases, the platform empowers patients to self-manage appointments, self-refer to NHS and non-NHS services, and access earlier interventions.

For professionals, the platform provides tailored education and resources designed to improve awareness, confidence and consistency in delivering person-centred care.

Developed through a collaboration between individuals with lived experience and Cardiff and Vale University Health Board, the Rare Care Centre is powered by Carecircle, a leading-edge technology for delivering co-ordinated care and support. The project demonstrates how Wales is leading the way in sustainable digital empowerment for underserved and complex patient communities.

Laura MacDonald, Chief Partnerships Officer for Carecicle 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.”

Rhiannon Edwards, Rare Disease Consultant Nurse for Cardiff and Vale University Health Board 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.”