Findacure [Legal Name: Findacure Foundation] is a national charity that builds the rare disease community to drive research and develop treatments. The charity promotes collaboration between patient groups, researchers and the pharmaceutical industry in order to raise awareness and promote research and development of treatments.
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Aims
Findacure has two aims:
History
Nick Sireau founded Findacure in 2012 with the understanding that small rare disease patient groups require practical advice and training in order to progress. This stemmed from his experience running The AKU Society; a patient group focused on alkaptonuria, an ultra-rare disease that affects his two children. Findacure is currently based in Cambridge, UK. It remains connected with a scientific advisory board composing of health professionals and experts in health consultancy and communications, and an empowerment advisory committee, composed of patients, patient group representatives, and carers. Since its founding the charity has partnered with two fellow rare disease initiatives: Innorare and the RE(ACT) Community. The charity continues to grow in the fields of patient advocacy and rare disease with the help of grants and donations.
Fundamental diseases
Rare diseases are fundamental because they provide essential understanding of the underlying mechanisms of more common diseases. For example, statins, which are now commonly prescribed for high cholesterol, were originally developed for the rare disease homozygous familial hypercholesterolemia. It is estimated that there are 5,000-7,000 rare diseases; the rarity of these diseases resulting in them often being neglected in research and development. Findacure believe by redefining this group of conditions as fundamental, new medical insights can be unlocked, leading to the discovery of new treatments and therapies.
Current activities
Findacure's activities can be split into two areas according to their two aims. For patient group empowerment, Findacure organises training workshops, webinars, a peer mentoring scheme and an online resources portal. Each of these projects focuses on key issues specific to rare disease patient groups. To promote collaboration, Findacure organises an annual conference, networking events, and their 'Student Voice' essay competition. The aim of these projects is to bring together a variety of stakeholders to think about and discuss rare diseases.