Rare Daily Staff
The U.K.’s National Lottery Community Fund awarded a three-year grant of more than $420,000 (£336,820) to Findacure, a Cambridge, U.K.-based organization that is building the rare disease community to drive research and develop treatments.
The Empowerment Programme will integrate all of Findacure’s patient group training projects including workshops, webinars, peer mentoring programs, and its e-learning portal.
Nick Sireau and Tony Hall founded the group in 2012. Sireau is the father of two boys with alkaptonuria, an ultra-rare genetic condition that causes bones to turn black and corrode. Tony Hall is an expert in orphan drug development.
Recognizing that about half of known rare diseases are without organizations focused on supporting patients and their families or driving research in those conditions, Findacure seeks to fill the void. The organization represents and supports patients and families on a range of issues related to their conditions, trains patients and their families to advocate, helps them build their own support groups and charities, assists them with raising awareness about their conditions and pursue research agendas.
“As a small charity, the grant will radically alter our funding model by providing us with the stability to be able to organize our projects on a longer-term basis,” the organization said in a blog post on its website. “It will therefore be a catalyst in helping us to transform the lives of people with rare diseases across the U.K., giving them the life-changing support they so desperately need.”
Photo: Nick Sireau and Tony Hall, co-founders of Findacure