The new rare disease framework, to replace the UK Strategy for Rare Diseases, will shortly be launched. We hope it will aim to improve inequality across the country, diagnosis, research and coordination of care to name a few.
We need to understand the detail of your experiences as a rare disease patient or carer, now, so that we can detect future changes brought about by the framework.
The survey is designed to capture the experience of patients affected by rare conditions and their carers. It should take no more than 30 minutes to complete. Watch our video to hear more from Lara:
Who can take part? You can take part if you are aged 18 or over. You can be: 1. a patient living with a rare or undiagnosed condition 2. a carer of a patient living with a rare or undiagnosed condition, giving the patient’s views or 3. a carer of a patient living with a rare or undiagnosed condition, giving your own views.
Carers can also include parents or relatives. You must live in the UK.
The survey is funded by Alexion, a global biopharmaceutical company focused on developing life-changing therapies for people living with rare conditions. The survey work (including design, analysis and report writing) will be undertaken by the research team at Genetic Alliance UK.