Rare Disease UK is undertaking a project investigating how public and major funding bodies in the UK, such as the National Institute of Health Research (NIHR), the Medical Research Council (MRC), the Wellcome Trust and Cancer Research UK support research into rare diseases. The goal is to produce a report assessing the way rare disease research is currently funded and supported and to develop a series of practical recommendations to help public/major funding bodies ensure that they are effectively supporting rare disease research.

A key part of this research involves gathering your views and experiences.

We would be grateful if you could complete our survey about your perception of the funding and support available for rare disease research. Even if you have little or no direct experience of research, your perception of research funding is really important. We are looking for the views of the broad spectrum of people with an interest in rare diseases including individual patients and family members, representatives of patient organisations, researchers, clinicians, health professionals and members of the pharmaceutical industry.

Please can you assist us by informing your networks about the survey and by encouraging them to respond?

You can complete the survey here:Rare Disease Survey
It should take no longer than 5 minutes. The closing date is the 30th of September.