Rare Disease Day 2026

Rare disease day is an annual celebration that shines a light on the three hundred million people living with rare conditions across the globe. Observed each year on 28 February, or 29 February on a leap year (the rarest day of the year), this patient-led movement brings together millions of individuals who feel the impact of rare disease in different ways. This includes families, caregivers, health care professionals, researchers, policy makers and most importantly, the patients themselves.

At Cardiff and Vale University Health Board, we will be ‘lighting up’ for rare disease across our University Hospital of Wales site, to show our support for the importance of raising awareness of patients living with rare disease, many of whom are under the care of our colleagues.

The SWAN (Syndrome Without a Name) Clinic, which is based at the University Hospital of Wales, have also been busy raising awareness of rare disease day, attending the Rare Disease Day Reception at the Norwegian Church in Cardiff Bay, on Wednesday 25^th February. Organised by Genetic Alliance UK, the event brings together brings together individuals from across the rare disease community, including patients, policymakers, professionals and support groups. The team attended the event alongside Pedal Power, a Cardiff-based, all-inclusive cycling charity who work to improve access to cycling for everyone, including those with disabilities.

The SWAN Clinic is an All-Wales service for adult and paediatric patients suspected of having a rare, undiagnosed condition. In July 2025, the clinic secured recurrent funding from the NHS Wales Joint Commissioning Committee following a successful three-year pilot funded by the Welsh Government.

SWAN Clinical Lead, Dr Graham Shortland, took the opportunity to raise awareness of SWAN patients and highlight the work of Pedal Power. He is pictured here with Rhys Holmes, a trustee of the charity.

Further information for professionals about referrals to the SWAN Clinic can be obtained by emailing SWAN.Clinic.Cav@wales.nhs.uk

More information about the SWAN Clinic

Find out more about Rare Disease Day