Earlier this year we were asked for help to fill out a survey looking at the impact of rare diseases. Genetic Alliance UK and Rare Disease UK worked with Shire Pharmaceuticals to pull the survey together.

The survey not only asked patients and their carers about the impact of rare diseases, but also clinicians, researchers, policy makers and payors.

A report looking at the findings of the survey has been published, comparing the impacts of rare diseases on those in the UK and the USA. The report is available here:Rare Disease Impact Report: Insights from patients and the medical community

This new report from Shire highlights and confirms the issues faced by patients affected by rare diseases. The inclusion and comparison of clinicians’, payors’ and patients’ experiences demonstrate the importance of working together, as a community, to tackle the issues faced by patients. It also highlights the importance of working with the international rare disease community in order to share best practices and information for all those affected.