Rare Disease Day 2026 (RDD 2026) is the global annual awareness day for genetic, rare and undiagnosed conditions and Genetic Alliance want YOU to be involved! They have created a short survey based on their Rare Disease Day 2026 theme of equity and if you have experience of rare conditions then they need your input.
What is the survey about?
Genetic Alliance UK is exploring the theme of equity for people living with rare conditions as part of their RDD 2026 campaign. They want to hear about your experiences of accessing healthcare for a rare condition, and how those experiences may have felt fair (equitable) or unfair (inequitable).
Your insights will help them understand what equity means to you. Your views will be essential in shaping their campaign so it reflects real experiences and real needs. Your survey responses will also guide their messaging and help them create resources and content in the lead-up to Rare Disease Day 2026 that call attention to the challenges faced by individuals and the wider community.
Who should complete the survey?
They want to hear from as many people as possible and they welcome contributions from:
- people living with rare, genetic or undiagnosed conditions
- carers and family members
- healthcare professionals
- support organisations
- researchers
- anyone connected to rare conditions
What to do next?
Please complete the survey and then share it with others who may want to complete it too so that they can include and amplify as many voices as possible. They want anyone connected to rare conditions to be part of their campaign and you are crucial in helping to make that happen. The survey closes at 17:00 on Tuesday 6 January 2026. Don’t delay – complete the survey and make sure your voice is heard on Rare Disease Day.