Study of patients' experiences highlights need for national strategy for rare diseases
A report released recently by Rare Disease UK (RDUK) demonstrates how patients and families affected by rare diseases frequently have problems accessing good quality services, care and support. The report, 'Experiences of Rare Diseases: An Insight from Patients and Families'[1], is based on a survey of 600 patients and families conducted by RDUK to examine a wide range of topics pertinent to patients with rare diseases: diagnosis, participation in research, access to treatment, information, ...
