Rare Disease Day
Rare Disease Day
Rare Disease Day is more than a date on the calendar, it is a global moment
of solidarity for the 3.5 million people in the UK living with a rare condition. This year, the focus has shifted from simply being ‘seen’ to being treated fairly.
On February 24, 2026 SMA UK attended the Westminster reception which brought together patients, clinicians, and policymakers to discuss a hard truth: while rare diseases are individually rare, they are collectively common. Yet, our healthcare systems are still designed for the ‘average’ patient, leaving the rare community behind.
We also attend the Rare Disease Day event at Holyrood in Edinburgh on the 19th February. Joined by several rare disease charities, partners and clinicians and MSPs the event was opened with a moving speech from Emma who lives with Williams Syndrome.
Both Bob Dorris MSP and Jenni Minto MSP & Minister for Health spoke about the ongoing commitment of NHS Scotland to Improve the diagnostic journey particularly within the Rare context and supported the release of the Genetic Alliance Equity for Rare report.
The Rare Disease Day Equity Report: Key Takeaways
The latest report from Genetic Alliance UK, Equity for Rare, highlights that ‘fair care’ does not mean treating everyone the same, it means responding to individual needs. Here are the pillars of the equity call:
- Ending the Diagnostic Odyssey: On average, it takes four years to receive a rare disease diagnosis. Equity means shortening this window so patients aren’t left in a vacuum without support.
- Coordination of Care: Only 1 in 10 adults with a rare condition have a care coordinator. Patients are often forced to be their own project managers, juggling dozens of appointments across unconnected departments.
- Access to Treatment: With only 5% of rare diseases having a licensed treatment, equity requires a fairer pathway for drug appraisal that recognizes the unique challenges of small patient populations.
- Invisible Disabilities: Many rare conditions are unseen or progressive. Equity means ensuring that disability benefits, education, and workplace support recognise these fluctuating needs.