Gwenn’s Law

This bill directs the Secretary of Health and Human Services (HHS) to implement two distinct public awareness campaigns. One campaign, managed through the National Institutes of Health (NIH), aims to significantly increase women's participation in NIH clinical trials, prioritizing those for rare diseases and conditions through targeted outreach. The second campaign focuses on boosting women's engagement in HHS research, surveillance, and prevention programs for bleeding and clotting disorders, including hemophilia. To further address rare diseases, the legislation establishes a permanent Interagency Task Force on Advancing Treatments for Rare Diseases within HHS. This Task Force, composed of federal health leaders and external experts, will assess federal activities and coordinate HHS efforts to incentivize research and development for rare diseases, especially those disproportionately impacting women. Additionally, the bill mandates the HHS Secretary to develop and publicly release an action plan within 180 days, detailing how HHS will coordinate efforts to incentivize research for rare diseases that disproportionately affect women.