The Scottish Parliament and Welsh Senedd elections are taking place on Thursday 7 May 2026
There are over 400,000 people in Scotland and over 180,000 people in Wales living with a genetic, rare or undiagnosed condition. For too many of them, Scotland’s NHS and social care system is failing to deliver equitable care.
Genetic Alliance UK has written to all candidates, urging them to champion the needs of those living with genetic, rare, and undiagnosed conditions, and outlining five clear priorities for the next parliamentary term:
- Faster diagnosis: Support expanded newborn screening, better awareness among healthcare professionals, and wider access to genetic testing to help end the diagnostic odyssey.
- Equitable access to specialist care: Support commissioning reform so that everyone with a rare condition gets the specialist support they need.
- Better access to treatments: Support greater investment in rare conditions research and ensure new therapies reach the people who need them without unnecessary delay.
- Coordinated care: Support efforts to ensure every person with a rare condition receives coordinated care and support on their healthcare journey.
- Deliver a bold new rare conditions framework: Work collaboratively with the other UK nations to develop a successor to the UK Rare Diseases Framework.
Read our open letters to candidates here:
- Open letter to Prospective Parliamentary Candidates in Scotland
- Open letter to Prospective Parliamentary Candidates in Wales
Cross party groups on genetic, rare and undiagnosed conditions
We are also calling on all newly elected representatives to support the re-establishment of the Cross-Party Group (CPG) on Genetic, Rare and Undiagnosed Conditions in both Parliaments. These groups are essential for bringing together politicians and the genetic, rare and undiagnosed community to drive meaningful, lasting policy change.
As the new Parliaments form, we will be launching a dedicated campaign to establish these groups.