Published work
We are proud to say that our team and co-founders have published or contributed to a host of publications, articles, reports and campaigns since we founded as in 2012. Our published work is available online and in print for all to enjoy.
View our work in the media and pick up your copy of our co-founders’ insightful books today!
Please note: We were previously known as Findacure before rebranding as Beacon in 2022.
Published articles
Our team has authored numerous articles both online and in print. Our published work can be seen in:
- The New Scientist
- PharmaTimes Magazine
- Pharmafile Magazine
- The Guardian
- Rare Revolution Magazine
- The Cambridge Independent
- Pharmaphorum
- The Welsh Pharmacy Review
- And more!
Read some (or all!) of our published articles and let us know what you think!
Rare disease publications
Our co–founders worked with experts in the rare disease field to produce two books for social entrepreneurs and patient organisations. These books share how to effectively engage in research and drug development based on the expertise of international leading charities, academics, researchers and pharmaceutical companies.
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 on Amazon. Kindle and Paperback copies are available!
The Patent Group Handbook: a Practical Guide for Research and Drug Development
Edited by Dr Anthony Hall and Dr Nicolas Sireau
Findacure Publications, 2016
This book provides a collection of chapters by world leaders in the field of orphan diseases and drugs to help patient groups grow fast and sustainably.
As a practical, hands–on guide for research and drug development, the Patient Group Handbook provides tools and advice on:
- 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
- How to navigate the regulatory process
All royalties from the sale of this book are donated to Beacon!
Get your copy on Amazon. Kindle and Paperback copies are available!
Scientific publications
We have contributed to scientific publications on drug repurposing and the cost burden of rare diseases. Our first publication in an open-access science journal focused on the cost of illness of the rare disease, congenital hyperinsulinism, entitled:
The burden of congenital hyperinsulinism in the United Kingdom: a cost of illness study
Quantifying the cost of rare diseases to both society and the health service was a crucial step in our drug repurposing social impact bond project. 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 Orphanet Journal of Rare Diseases. The journal is open access and the article can be viewed online!
Rare disease perspectives 2016 – RDDR SIB focus group reports
As part of our social impact bond proof of concept project, we ran a series of focus groups with individuals living with one of three specificrare diseases – congenital hyperinsulinism, Wolfram syndrome and Friedreich’s ataxia – to capture their lived experiences.
We asked participants to share their experiences with:
- The NHS
- Their treatment options
- Clinical trials
- The cost of living with a rare disease –both for themselves and their family
These discussions were designed to highlight the need for:
- New treatments for rare disease patients
- Improved support and care from the NHS and wider society
Our findings have been used to produce a series of reports, entitled “Rare disease perspectives”, which we are pleased to share with you here.
Rare disease patients
This report covers the opinions of a focus group featuring patients with a range of different rare conditions patients with a range of different conditions.
Congentical hyperinsulinism
This report covers the opinions of a focus group featuring parents of children with congenital hyperinsulinism (CHI).
Friedreich’s ataxia
This report covers the opinions of a focus group featuring Friedreich’s ataxia patients and family members.
Wolfram syndrome
This reports covers the opinions of a focus group featuring Wolfram syndrome patients and parents.
Rare disease patients
This report covers the opinions of a focus group featuring patients with a range of different rare conditions patients with a range of different conditions.
Congentical hyperinsulinism
This report covers the opinions of a focus group featuring parents of children with congenital hyperinsulinism (CHI).
Friedreich’s ataxia
This report covers the opinions of a focus group featuring Friedreich’s ataxia patients and family members.
Wolfram syndrome
This reports covers the opinions of a focus group featuring Wolfram syndrome patients and parents.
Impact reports
We release an annual impact report to highlight our work over the last twelve months. Our impact report demonstrates the value of our work through testimonials, case studies and event recaps.
Each annual report includes a welcome letter from our CEO and a letter from our Co-Founder, Dr Nick Sireau. Our annual impact report is our chance to thank our supporters and celebrate our achievements as a charity and community.
You can download digital copies of our impact reports below to catch up on our work to date.
