Today, Congress is taking the first step on appropriations to fund the Food and Drug Administration’s FY27 operations, including the critical work the FDA does to evaluate therapies for rare diseases. In advance of the markup, the EveryLife Foundation submitted a statement to the subcommittee, urging lawmakers to support the inclusion of funding for the Rare Disease Innovation Hub, an ask first made by the hundreds of advocates who joined us in Washington, DC for Rare Disease Week 2026.
The rare disease community is requesting that the Hub receive $5 million in funding to carry out its agenda, which includes hosting additional RISE Workshops, creating opportunities for rare disease patient organizations and experts to inform the therapy development and evaluation process, and streamlining navigation of the FDA’s rare disease resources. Dedicating funds to the RDIH ensures that the Hub can continue to grow its role in improving coordination across the FDA, leading to more consistent approaches to rare disease therapy development.
This request is supported by more than 25 Congressional members who sent a letter to the subcommittee in March, and we look forward to continuing to work with Congress to ensure that Rare Disease Innovation Hub is resourced and can work to its fullest potential.
Share your support for rare disease funding at the FDA here.
Read the full statement here.
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