US FDA and NIH Postpone Rare Disease Awareness Event Amid Health Agency Changes

New Delhi: The U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) have postponed their annual Rare Disease Day event, originally scheduled for February 27-28, 2025. A notice on the FDA's website stated, "After much consideration, we are postponing FDA-NIH Rare Disease Day 2025 and will reschedule it to occur in the coming months."

As reported by Reuters, this marks the second health-related meeting postponed in the first week after Robert F. Kennedy Jr. was confirmed as the Secretary of Health and Human Services. Just days earlier, a U.S. vaccine advisory meeting set for late February was also delayed.

The Rare Disease Day event was set to include discussions on artificial intelligence, early diagnosis, gene therapies, and access to rare disease treatments, with speakers including FDA Acting Commissioner Sara Brenner and NIH Acting Director Matthew Memoli.

The postponement has raised concerns among rare disease advocates, who say such an event has rarely been delayed in the past.

"Outside of a global pandemic or a government shutdown, the Rare Disease Day at the NIH has gone forward every single year," said Paul Melmeyer, who oversees public policy and advocacy at the Muscular Dystrophy Association. He has attended the NIH’s Rare Disease Day since at least 2013, Reuters reported.

Employees at the FDA and NIH have been affected by recent layoffs, as the new administration restructures federal health agencies. While the exact number of FDA staff impacted remains unclear, reports indicate that more than 1,100 employees were laid off at the NIH.

A representative from the EveryLife Foundation for Rare Diseases, a nonprofit advocating for rare disease research, also suggested that recent policy shifts played a role in the decision:

"We are aware that the agencies are being significantly impacted by the recent executive orders... (and) can only assume that these shifts have made it challenging to host an event like this at this time," the representative told Reuters.

The FDA and NIH have confirmed that the event will be rescheduled in the coming months, according to the FDA.

Since 2008, Rare Disease Day has been observed globally on February 28 (or February 29 in leap years) to raise awareness among policymakers and the public about rare diseases and their impact on patients' lives.