Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of this month. Collin is an expert on the subject. For her University of Bathdissertation, she analyzed Brexit’s long-term impact on the 3.5 million people in England, Scotland, Northern Ireland, and Wales, who have rare diseases — and concluded that nothing good will come of it. “Until the Brexit vote in 2016, UK-based rare disease advocacy groups were always essential to the work of the EU,” Collin wrote in her paper, which has not yet been published. However, she warned, Brexit — now set for March 29 unless the British Parliament approves an extension with the approval of the EU’s 27 other members — could undermine the work of those charities. This, she said, “suggests they will no longer be able to adequately represent the needs of patients at a European level … and will lose their power to influence EU legislation.” About 50 British patient advocacy groups currently belong to Eurordis, a Paris-based coalition of 837 smaller organizations that advocates for improved diagnosis of some 7,000 rare diseases and access to therapies to treat those illnesses. Through Eurordis, for example, in 2011 all British citizens gained the right to genetic testing that would help them learn whether they have any genes linked to inherited disorders. But now, instead of lobbying the EU, British rare disease advocates will be forced to lobby the British government
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