Between October and November 2012, Rare Disease UK (RDUK) carried out a survey of patients and families living in Scotland affected by rare diseases. The aim of this survey was to find out more about the experiences of people in Scotland living with a rare condition, and to identify some of the common issues and problems they face.

The results support the need for a rare disease strategy in Scotland. RDUK believes that a strategy would reduce the fragmentation of services and ensure that patients of rare conditions are able to access high quality care, information and support in a timely and equitable manner, whilst at the same time making the use of NHS resources more efficient.

Summary of key findings:

Research

Diagnosis

Information

Coordination of Care

Access to Services