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Charity number: 1149646
Findacure is a UK charity that is building the rare disease community to drive research and develop treatments. We work to: 1) Empower patient groups to build their patient communities, develop as a charity, and drive treatment research and development. We organise training workshops, a peer mentoring scheme, and an online resources portal. We believe that patient groups have a crucial role to play in representing patient needs and the patient voice in research. 2) Promote collaboration between rare disease stakeholders to facilitate treatment development for all. We run networking events and conferences, as well as a medical student essay competition to raise awareness of the fundamental importance of rare diseases. We also are setting up our own drug repurposing programme using innovative social financing. In undertaking this work, Findacure follows in the footsteps of William Bateson, a father of modern genetics, who reminded us to 'treasure our exceptions'.
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