twitter facebook email
"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


You are here: Home / Living with a Rare Disease / Experiences of Rare Diseases report

Experiences of Rare Diseases: An Insight from Patients and Families

Experiences of Rare Diseases: An Insight from Patients and Families

Over the summer of 2010, Rare Disease UK 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, reveals the results.

We use these findings to promote better awareness of rare disease issues among the public, policy makers and health professionals.

Download a PDF of the report here.

If you would like a hard copy, please email .


Overview of the report

There are over 6,000 recognised rare diseases each with different symptoms and prognoses, yet our research highlights that patients and families frequently face common problems regardless of which rare condition they are living with.

Click here for an overview of the report.


Key statistics from the report

The survey covered five different aspects of living with a rare disease - diagnosis of the condition, patient information and support, coordination of care, participation and awareness of research into the condition, and access to treatments.

Please click here to see the key statistics and some patient and family quotes from each section.

To download the key statistics from the report as a PDF, please click here.


Media coverage

This report generated a wide amount of media coverage in both local and national news. Please click here for further details.