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A report from Genetic Alliance UK has claimed that the NHS is failing to meet the needs of many of the 3.5 million people in the country who live with a rare disease.
Released ahead of tomorrow’s Rare Diseases Day, the report (PDF) says that people affected by rare conditions face “profound systemic inequity, often experiencing a complicated diagnostic odyssey followed by fragmented care and limited access to treatments.”
That assessment stems from 290 people living with a rare disease in the UK who were polled as part of Genetic Alliance UK’s Equity for Rare consultation, which is looking…