"Rare diseases are not as rare as you may think. Approximately 10% of the global population or 475 million people are affected by a “rare” condition. But national approaches to rare-disease research fall short due to the lack of combined data and an uncoordinated global approach.
A more integrated system of gathering genomic data offers a solution with potential channels for return on investment. Only 5% of the 475 million people with rare disease have a treatment. Given that 80% of these diseases have genetic causes (meaning that people tend to be born with a rare disease), sufferers are highly likely to be children, with 30% of them dying before they reach their fifth birthday – often without a diagnosis. More than 450 million people – near the populations of the USA, Australia, Canada, and the UK combined – are living without a treatment or an opportunity to get better".
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