{"id":62292,"date":"2025-08-06T09:34:09","date_gmt":"2025-08-06T09:34:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/62292\/"},"modified":"2025-08-06T09:34:09","modified_gmt":"2025-08-06T09:34:09","slug":"rare-disease-patients-caught-up-in-overseas-research-funding-cuts","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/62292\/","title":{"rendered":"Rare disease patients caught up in overseas research funding cuts"},"content":{"rendered":"

Mid-April was a nerve-racking time to arrive on the National Institutes of Health campus outside Washington, D.C.\u00a0\u2014 it was just two weeks after more than 1,000 NIH employees had been laid off in a chaotic downsizing<\/a> of the federal workforce that disrupted many of the health agency\u2019s core functions. Ellyn Kodroff had flown in from Chicago for the start of her daughter Jori\u2019s experimental treatment for a rare digestive disorder. Swallowing food was so painful for Jori, 32, that she\u2019d largely been on a liquid diet since she was 14. Now her health had taken a turn, and Ellyn wanted to be by her side as she received her first injection at the NIH Clinical Center<\/a>.\u00a0<\/p>\n

The Kodroffs feared the treatment would be delayed. Luckily for them, it wasn\u2019t. But while in Bethesda, Md., they received bad news of a different sort: The NIH had tossed out a grant application to support a network of researchers who study Jori\u2019s inherited disease, including the one running her clinical trial, throwing a decade of rapid progress against the disease into jeopardy.\u00a0<\/p>\n

The reason? A paperwork error.<\/p>\n

The funding renewal had been caught up in a Trump administration crackdown<\/a> on NIH grants being used to support international collaborations, a sudden policy change that White House officials said was driven by concerns over national security, including claims that research by an NIH grant recipient in China had seeded the Covid pandemic.\u00a0<\/p>\n

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