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‘Rare Disease Drug Repurposing Social Impact Bond’ project and open call

March 28th, 2017 Libbie Read, Fundraising and Communications Officer at Findacure
‘Rare Disease Drug Repurposing Social Impact Bond’ project and open call
Dr Rick Thompson, Findacure's Head of Research Credit: Findacure and Barbara Asboth Photography

A rare disease is defined in Europe as a condition that affects less than 1 in 2,000 people. 7,000 rare diseases are currently known, affecting 350 million people worldwide (1). But because each individual condition has such a small patient population, rare disease patients face extra barriers to good health compared to those with more common conditions.

One such barrier is access to treatments. Because of the cost of novel drug discovery, it is often unprofitable to develop therapies for rare diseases, meaning only 400 of the 7,000 rare diseases have a licensed treatment. Treatments that do exist often carry extortionate price tags and they regularly remain unapproved by the cost-effectiveness watchdog NICE. The EvaluatePharma Orphan Drug Report for 2017 found an average per patient per year cost for an orphan drug to be over $140,000, with non-orphans delivered for $27,750 (2).

To address this unmet need, Findacure, a Cambridge-based charity, have launched their 'Rare Disease Drug Repurposing Social Impact Bond (RDDR SIB)' project. This model uses private investment to fund phase II clinical trials of existing generic drugs that can be repurposed (reused) to treat unsolved rare diseases. The project specifically targets rare diseases with a high burden and cost of care to the NHS, in which case, successfully repurposing a generic drug is likely to save the NHS enough money to reimburse the cost of the clinical trial, pay back investors, and still make further savings.

‘Rare Disease Drug Repurposing Social Impact Bond’ project and open call
Putting hands up for rare diseases at Findacure's 'Drug Repurposing for Rare Diseases' conference Credit: Findacure and Barbara Asboth Photography

Findacure calculated the current cost of three rare diseases to the NHS, and potential savings that could be made by a repurposing a specific drug to treat them, in their proof of concept study in 2016. Combined, the three projects could save the NHS £2.3 million over five years – more than sufficient to cover the cost of the three phase II clinical trials required.

Findacure have now launched an open call for drug repurposing projects in collaboration with their partners Healx and Cures Within Reach. Researchers, clinicians, patient groups and companies from around the world are invited to submit their drug repurposing ideas to the open call for the opportunity of help progressing their project into clinical phases, including potential funding through the social impact bond.

[We would be delighted to discuss the project further with you. Rick Thompson, our Head of Research, can be contacted via [email=rick@findacure.org.uk]rick@findacure.org.uk[/email] or on 01223 222767. More information can also be found on our website: www.findacure.org.uk/drug-repurposing]

More information:
(1) Global Genes website. "Rare Diseases: Facts and Statistics". globalgenes.org/rare-diseases-facts-statistics/. Accessed 28/03/17.

(2) EvaluatePharma Orphan Drug Report 2017. 4th Edition. www.evaluategroup.com/public/R … rug-Report-2017.aspx. Accessed 28/03/17.

Provided by Findacure Foundation

Citation: ‘Rare Disease Drug Repurposing Social Impact Bond’ project and open call (2017, March 28) retrieved 27 September 2025 from https://sciencex.com/wire-news/252141881/rare-disease-drug-repurposing-social-impact-bond-project-and-ope.html
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