Genetic Alliance UK Rare Disease Day 2026 survey
Genetic Alliance UK are running a survey to explore what equity in healthcare means for people living with rare conditions, and they need your help. As part of their Rare Disease Day 2026 campaign, they want to hear about real experiences of accessing healthcare and whether those experiences have felt fair or unfair.
Your insights will directly shape their campaign messaging and help them create resources that reflect the genuine challenges faced by individuals and the wider rare disease community. They're keen to hear from as many voices as possible, including people living with rare, genetic or undiagnosed conditions, carers, family members, healthcare professionals, researchers and anyone else connected to rare conditions. A rare condition is one that affects less than 1 in 2,000 people and includes some eye conditions such as Alstrom Syndrome, Bardet-Biedl syndrome and Stargardt's.
You can complete the survey here. The closing date is Tuesday 6th January 2026.
Posted on the 15th of December 2025