The EveryLife Foundation for Rare Diseases has submitted a letter to Congress advocating for the inclusion of a Rare Disease Center of Excellence in the 2025 appropriations bill. This initiative aims to establish a dedicated center within the FDA to streamline and enhance the regulatory process for rare disease therapies.
Signed by more than 100 patient organizations and advocates, the letter highlights the urgent need for a centralized hub that brings together the FDA’s extensive rare disease expertise. This Center of Excellence would coordinate efforts across multiple review divisions, addressing the unique challenges of rare disease drug development, such as small patient populations and dispersed clinical trial sites.
The letter is addressed to key members of the Senate and House Appropriations Committees, emphasizing the critical impact this center would have on accelerating the development of effective treatments for the over 10,000 rare diseases affecting more than 30 million Americans.
For more information and to read the full letter, visit the EveryLife Foundation’s Center of Excellence page.
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