In order to help understand the experiences of people living with a rare disease in Scotland and Wales, Rare Disease UK (RDUK) is undertaking two surveys which will help inform two landmark reports which will be launched on Rare Disease Day 2013. These reports will help us to build and strengthen our campaign to improve NHS services, information and support to people living with rare diseases in Scotland and Wales.
In 2010, RDUK launched a report ‘Experiences of Rare Diseases: An insight from patients and families’. These new Scotland and Wales reports will build on this evidence and provide powerful new information in the context of the separate health services in Scotland and Wales. We are looking for patients or their carers/family to complete the survey which looks at experiences trying to obtain a diagnosis, coordination and access to services, access to information and involvement in research.
**** We will keep the survey open until Sunday 25th Nov. ****