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Rare Diseases 2021

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It is estimated that 3.5 million people in the UK will be affected by a rare disease at some point in their lives. Though rare on an individual basis, rare diseases are collectively common. How can better health data and advances in genomics produce better outcomes for patients? Are there wider benefits to rare disease research and funding? How has Covid affected the rare disease community? This report considers some of the lived experiences of rare disease patients, and also explores opportunities for improved testing, diagnosis and treatment.