Findacure produces and publishes a number of documents and reports that are freely available to the general public. Here you will find links to view and download these materials.
As part of our social impact bond proof of concept project, Findacure ran a series of patient focus groups. These were designed to capture the patient experience of living with one of three specific rare diseases – congenital hyperinsulinism, Wolfram syndrome, and Friedreich’s ataxia – as well as rare diseases more generally.
For each report we assembled a panel of people affected by a rare disease, and asked them to share and discuss their experiences of the NHS, the treatments that are available to them, their experience of clinical trials, and the costs of the disease to themselves and their family. These discussions were designed to highlight the need for new treatments for rare disease patients, as well as improved support and care from the NHS and society at large. Our findings have been used to produce a series of reports, entitled “Rare disease perspectives”, which are pleased to share here.
This report covers the opinions of a focus group featuring patients with a range of different rare conditions.
This report covers the opinions of a focus group featuring Friedreich’s ataxia patients and family members.
To learn more about Friedreich’s ataxia visit Ataxia UK.
This report covers the opinions of a focus group featuring Wolfram syndrome patients and parents.
The discussions we had were revealing, fascinating, and occasionally emotional. We’d like to thank everyone who took part in this project and shared their personal experiences. We hope these reports are useful to the rare disease community at large, though please note the images used for the reports do not feature focus group members.
Feel free to email [email protected].org.uk with your thoughts.
We release an impact report every January to showcase work from the previous year and thank everybody who made it possible.
This impact report celebrates our fantastic work and achievements in 2016, and thanks all those who made it possible.
Read our 2015 impact report to find out what we got up to and our highlights from that year.
Our first ever impact report introduced Findacure, our proudest moments in 2014, and a handful of the first people and patient groups we helped.