Improving Lives, Optimising Resources (2011)

Rare Disease UK’s (RDUK) report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy describes the obstacles preventing patients and families being able to access the high quality services, treatment, care and support that would ensure they benefit from optimum health outcomes. The report sets out recommendations developed in collaboration with a […]

Experiences of Rare Diseases: An Insight from Patients and Families (2010)

Over the summer of 2010, Rare Disease UK (RDUK) conducted a survey of patients’ and families’ experiences of living with a rare disease. The aim was to identify and better understand common issues and problems faced by those living with a rare disease. We received responses from 600 patients and families affected by over 100 […]