15% NIH INDIRECT COST LIMIT WILL CRIPPLE VITAL RESEARCH

Research is key to finding a cure for cystic fibrosis and countless other diseases that impact life expectancy and quality of life. Unfortunately, tens of thousands of research projects at medical and academic institutions nationwide are at risk of collapsing, due to a proposed policy that caps NIH (National Institutes of Health) grant funding of indirect costs at 15%.

This shift in policy will render many research projects related to cystic fibrosis, cancer, heart disease, and countless other diseases financially incapable of continuing. We must help our decision makers to understand the devastating implications of this policy. Please join CFRI in asking your elected representatives in the House and Senate to retract this policy so that research can continue to preserve the lives of our loved ones.

CALIFORNIA'S RDAC REQUIRES FUNDING TO ENACT CHANGE!

The Jacqueline M. Zbur Rare Disease Advisory Council (RDAC) (AB 2613, 2024) establishes an advisory body for the California Legislature to help ensure healthcare access and health equity. With over 10,000 rare diseases affecting 1-in-10 Californians, a strong RDAC will help relieve burdens on the State by conducting research, crafting policy recommendations, and advocating for critical initiatives.

Despite AB 2613 being signed into law by Governor Gavin Newson, creation of this Council—comprised of stakeholders across the rare disease community—remains stagnant until the budget request is passed. Join CFRI in urging the Assembly Budget Subcommittee No. 1 on Health to support funding for the RDAC to ensure rare disease voices and perspectives are prioritized in legislative decision making.