Findacure
1733. Nicolas Sireau
1734. Anthony Hall
Dr Nicolas Sireau and Dr Anthony Hall, from Cambridge, founded 'Findacure', a UK charity driving research and developing treatments into rare diseases, and bringing together families from across the rare disease community.
Nicolas’s two sons were born with the rare disease alkaptonuria, an ultra-rare genetic condition that causes bones to turn black and their surface to corrode. At the time of his sons’ diagnoses, there was no treatment available, leading Nicolas to quit his job to help grow the ‘AKU Society’, a charity that now supports patients around the globe. After being contacted by other patients and parents wanting to repeat this work in relation to their own rare conditions, Nicolas realised the need for creating an organisation that could help share advice and knowledge across patient groups. Connecting with Anthony, an expert in orphan drug development who was interested in establishing an organisation to work on sustainable models for not-for-profit drug development for rare diseases, the two set up ‘Findacure’ together in 2012. The charity aims to transform the world’s understanding of rare diseases, of which over 7,000 have been identified, and the impact which they have on people’s lives. Anthony and Nicolas have published and contributed to a range of books, scientific articles and impact reports, and throughout the pandemic they have delivered a number of virtual seminars and workshops, including a Drug Repurposing for Rare Diseases conference.
In a personal letter to Nicholas, Prime Minister Boris Johnson said:
“We have all been utterly inspired by the power of science during the pandemic. So I am lost in admiration for your work at ‘Findacure’ driving research into rare diseases.
“I know this thirst for scientific advancement comes from your own experience with your sons’ rare diseases. It is wonderful that you have found a way to help other families learn about rare conditions and support them as you strive to discover treatments.”
In a personal letter to Anthony, Prime Minister Boris Johnson said:
“Alongside Dr Sireau, you have created a community for those living with rare diseases and your patient groups will be a source of comfort to those who may feel isolated by the rarity of their condition. You are also helping the medical and scientific community make invaluable strides towards research and cures giving hope to the thousands of people in the UK living with these conditions.”
Daniel Zeichner, MP for Cambridge, said:
“I am truly delighted for Dr Sireau and Dr Hall, both of whom are worthy recipients of this award. By setting up Findacure, they are transforming our understanding of the challenges facing patients with rare conditions and helping build a strong, united rare disease community to drive research and develop and enhance treatments”
Dr Nick Sireau said:
“I’m overjoyed to be receiving this Point of Light award from the Prime Minister. It will help Findacure raise awareness of the challenges facing patients with rare diseases in the UK and abroad and help us work with them to overcome this.”
Dr Anthony Hall said:
“I am delighted that Nick and I are receiving this Points of Light award from the Prime Minister. Of course, the real heroes of Findacure are the dedicated staff who work energetically every day to help build a stronger rare diseases community and to assist patient organisations in supporting their patients and families.”