Findacure is a UK Charity that is building the rare disease patient movement, in order to drive research and develop treatments into neglected rare conditions.
Findacure empowers rare disease patient groups to develop the skills they need to grow as organisations; whether this is in setting up a charity or foundation, or in developing medical research projects, or in supporting their members to improve their health outcomes.
Findacure believes building a patient movement is important, because support groups for rare diseases are generally run by patients themselves, their parents and carers, rather than by a health body. They are not necessarily equipped with the tools to run a successful organisation, but they all have the same need for support and to learn about treatment development.
Rare diseases are neglected, and patients are often left without hope. Of the 7,000 known rare diseases, barely 200 have cures. The average patient will wait 8 years for an accurate diagnosis, and 30% of children diagnoses with a rare disease will not live past 5. We bring all the different patient groups together, to build a rare disease community that's so much stronger than if they all worked in isolation. We offer expert training from drug developers, researchers, academics and successful patient groups to help them move forward, and accelerate the search for cures.
We are also building a nationwide drug repurposing project; finding drugs which are already approved for one condition, and repurposing them as treatments for rare conditions - this bypasses the expensive clinical trials which prevents research from occurring for rare diseases.
Findacure aims to:
- Empower rare disease patient groups and to build a stronger community, able to take control of their diseases and meet the challenges of patient support and developing medical research.
- Facilitate the development of treatment for rare diseases through drug repurposing: finding drugs which are approved for use in one condition, and using them for treatments in rare conditions.
- Campaign for a receptive research environment for rare diseases, through Sufficient Conferences and network building between patients with policy makers, pharma, biotechs and academic research.
Established: November 2012
Registered Charity Number: 1149646
Board members: 16
Full time staff: 3
Part time staff: 1
Phone number: 01223222767
Address: 66 Devonshire Road CB1 2BLView charity accounts on the Charity Commission website
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