Close this search box.

New EveryLife CEO seeks to double its budget, reach

ARTICLE | Politics, Policy & Law

Michael Pearlmutter brings personal experience growing a patient group, personal experience with rare disease 

By Steve Usdin, Washington Editor

April 9, 2024 12:15 AM UTC

As the new CEO of the EveryLife Foundation for Rare Diseases, Michael Pearlmutter has landed in a public policy environment in which politicians are personally sympathetic to the needs of rare disease patients but antagonistic to the companies that are trying to develop the medicines they need. He’ll be leading and trying to grow an organization that is trying to craft and advocate science-based policies that reconcile these trends.

In recent years, the orphan drug tax credit has been halved, the Inflation Reduction Act has disincentivized the development of orphan drugs for more than a single indication, and influential academic researchers have advocated elimination of orphan exclusivity. The pediatric rare disease priority voucher program will sunset soon if Congress doesn’t reauthorize it…