We have published or contributed to of a range of books, scientific articles, impact reports, and focus group reports
Findacure produces and publishes books, reports and other articles that are available to the general public. Here you will find links to view and download these materials.
Books on rare diseases and patient groups
We have brought together experts in the rare disease field to produce two books for social entrepreneurs and patient organisations. These books share the expertise of international leading charities, academics, researchers, and pharmaceutical companies on how to effectively engage in research and drug development. Please find their abstracts below, as well as links to get your own copy.
Rare Diseases: Challenges and Opportunities for Social Entrepreneurs
Edited by Dr Nick Sireau
Greenleaf Publishing Limited, 2013
In recent years, there has been a surge of interest from business and social entrepreneurs in treating rare disease patients better and faster.
This book presents some of the latest developments in the world of rare disease entrepreneurship from a global group of experts. It examines the topic from the business angle, considering the drug development process and providing case studies of successful orphan drug enterprises. It also looks at rare diseases from the perspective of the patient, analysing the growing rare disease patient movement, a successful patient group that uses social enterprise techniques, and chapters on key requirements for helping patients with rare diseases through registries and centres of excellence.
Get your copy here on Amazon – Kindle and Paperback copies available.
The Patient Group Handbook: a Practical Guide for Research and Drug Development
Edited by Dr Anthony Hall and Dr Nicolas Sireau
Findacure Publications, 2016
This new book provides a collection of chapters by world leaders in the field of orphan diseases and drugs in order to help patient groups grow fast and sustainably.
As a practical, hands-on guide for research and drug development, it provides tools and advice on topics such as: how to set up and manage a patient group; how to build international research consortia; how to engage with academia for drug discovery; engaging patients and carers around clinical trials; new funding strategies for clinical research; orphan drug legislation and adaptive licensing; and how to navigate the regulatory process. All royalties from sales of this book are being donated to Findacure.
Get your copy on Amazon here – Kindle and Paperback copies available.
Focus group reports
Rare disease perspectives 2016 – RDDR SIB focus group reports
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 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.
Feel free to email rick@findacure.org.uk with your thoughts.
Rare disease patients
This report covers the opinions of a focus group featuring patients with a range of different rare conditions.
Congenital hyperinsulinism
This report covers the opinions of a focus group featuring parents of children with congenital hyperinsulinism (CHI).
To learn more about CHI visit the Children's Hyperinsulinism Charity.
Friedreich's ataxia
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.
To learn more about Wolfram syndrome visit Wolfram Syndrome UK.
We release an impact report every year to showcase our work over the last twelve months and thank everybody who made it possible. Follow the links below to download digital copies of these reports, and to catch up on all of Findacure's work to date.
2018 was a fantastic year for Findacure. Read our Impact Report to find out about all of the things we got up to, including developing our workshops and peer mentoring programmes, as well as our first ever Scottish event!
We have contributed to scientific publications on drug repurposing and the cost burden of rare diseases. Our first publication in an open access journal focused on the cost of illness of the rare disease congenital hyperinsulinism. Find out more and access it below.
The burden of congenital hyperinsulinism in the United Kingdom: a cost of illness study
Quantifying the cost of rare diseases to the health service and society is a crucial step in our drug repurposing social impact bond. We worked with rare disease patient groups, clinicians and Costello Medical Consulting to calculate the cost of illness of three rare diseases: congenital hyperinsulinism, Wolfram syndrome, and Friedreich's ataxia.
The first cost of illness model for congenital hyperinsulinism has been published in the Orpanet Journal of Rare Diseases. The journal is open access and the article can be viewed online.
Annual accounts and trustee reports
All of our annual accounts and trustee reports are uploaded to the Charity Commission website. They can be downloaded from their 'charity overview' page for Findacure.
Essay competition winners
Since 2015 the winning entries in Findacure's annual essay competition, The Student Voice have been published as blogs, or as open access articles in Orphanet Journal of Rare Diseases. If you would like to view these winning entries, you can find links to all of them on our essay competition page.