Trump Policies Snarl NIH Grants as Sarepta Taps Ally After Gene-Therapy Death

A paperwork crackdown by the Trump administration on National Institutes of Health grants is stalling several international collaborations focused on rare diseases, according to researchers cited in recent reports. Projects have been rejected or delayed after investigators failed to satisfy newly tightened rules governing disclosures of foreign support. Scientists working on ultra-rare conditions say the interruptions are ‘devastating’ because many studies rely on small global patient pools. Separately, Sarepta Therapeutics has retained the Washington law and lobbying firm Holtzman Vogel, whose partners include former Trump campaign officials, to press its case on Capitol Hill and at federal agencies. The engagement began after the reported death of a teenage boy who had received Sarepta’s gene therapy Elevidys for Duchenne muscular dystrophy, an incident that intensified the company’s negotiations with the Food and Drug Administration over the product’s safety profile. The two developments underline how policy decisions and political connections in Washington are reshaping the landscape for rare-disease research, from academic laboratories dependent on NIH funding to biotechnology firms navigating post-approval safety reviews.