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 different rare conditions. The survey dealt with experiences in a range of areas including research, diagnosis, and access to care, information, support and treatment.
Our report, Experiences of Rare Diseases: An Insight from Patients and Families, published in December 2010, revealed the results.
Some of the common problems experienced included:
The findings of the report have been extremely useful in our work to promote better awareness of rare disease issues among the public, policy makers and health professionals.