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The Guardian - US
The Guardian - US
Science
Melody Schreiber

Patients with ultra-rare diseases worry FDA approach will leave them without treatment

A young girl with pink glasses.
Hope Filchak suffers from the extremely rare MLS syndrome. Photograph: Caroline Filchak

US drug regulators have increasingly signaled a focus on faster approvals and rare diseases, but patients with ultra-rare ailments fear they are falling through the cracks, especially given challenges to conducting clinical trials.

One drug, elamipretide, garnered a narrow recommendation from independent advisers for the US Food and Drug Administration (FDA), but the agency rejected the drug’s application in May and recommended another potential pathway for approval.

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