Survey for Rare Disease Patients
09 September 2015
Genetic Alliance’s initiative, Rare Disease UK, has launched a survey into patient experiences of rare (including genetic) and undiagnosed conditions to inform the influencing and campaigning work they do.
Anyone who has, or cares for someone with, these conditions can fill in the survey. RDUK aims to get a full, up-to-date picture of the experiences of rare disease patients.
This survey follows on from a survey that RDUK carried out in 2010. The report from the 2010 survey has been invaluable in the influencing and campaigning work that they do. They intend that the report from this year’s survey will serve the same purpose in supporting the work of RDUK, Genetic Alliance UK, SWAN UK and their members, which includes SMA Support UK.