Sponsors (4)
The bill expands outreach, funding, and federal coordination to improve clinical trial access and research for women and rare-disease patients, but does so at modest federal cost and with risks of limited impact, administrative burdens, and possible diversion of research resources if implementation and targeting are weak.
Women (including those with bleeding/clotting and rare diseases) and patients with rare conditions will receive expanded outreach and enrollment opportunities in NIH clinical trials and research, improving diagnosis, prevention, and access to potential treatments.
Federal coordination and a formal advisory role for rare disease advocates (including four appointed seats) will provide clearer priorities and transparency, helping align HHS/NIH guidance, improve grant targeting, and amplify patient voices in policymaking.
Dedicated funding ($10M/year for FY2027–2031, ~$50M total) is authorized to implement the outreach campaigns, increasing the likelihood that outreach and enrollment activities will actually be carried out rather than remaining unfunded guidance.
Taxpayers will fund the campaign (about $50 million over five years) and the bill creates/anticipates a new federal body that could add ongoing administrative costs.
If appropriations are limited, outreach activities could divert NIH staff time and resources from other research priorities, potentially slowing unrelated scientific work.
Outreach and campaign messaging may be ineffective or poorly targeted, so spending may not materially change enrollment or health outcomes despite the investment.
Based on analysis of 5 sections of legislative text.
Directs HHS to run two public awareness campaigns, create a permanent rare-disease Task Force, and publish an action plan to increase women’s participation and advance R&D, with annual funding authorized.
Introduced February 25, 2026 by Josh S. Gottheimer · Last progress February 25, 2026
Requires the Department of Health and Human Services (HHS) to run public awareness campaigns to increase women's participation in NIH- and HHS-supported research, including a campaign focused on bleeding and clotting disorders, and authorizes funding for those campaigns for FY2027–FY2031. Creates a permanent Interagency Task Force on Advancing Treatments for Rare Diseases, requires HHS to publish an action plan within 180 days, and directs coordination to incentivize research and development for rare diseases that disproportionately affect women.