Last year, when funding for the TSCRP and other Congressionally Directed Medical Research Programs was cut for FY25, the TSC community joined together, working hard to make their voices heard on the importance of federal funding for TSC research. We are thrilled to announce the following has been signed into law for FY26 appropriations.
- The TSC Research Program (TSCRP) has been reinstated and increased to $10 million in the Department of Defense appropriation (a $2 million increase).
- Report language is included in the Labor, Health, and Human Services appropriation for the National Institutes of Health (NIH) requiring no less than $30 million be spent on TSC research across NIH Institutes. In 2024, TSC Categorial spending at NIH was $21 million (a $9 million increase).
A tremendous debt of gratitude is owed to our Dear Colleague Letter Sponsors: Representatives Brian Fitzpatrick (R-PA) and Jamie Raskin (D-MD) and Senators Kevin Cramer (R-ND) and Martin Heinrich (D-NM), and Senator Eric Schmitt (R-MO), especially for his efforts to increase TSC research funding at the NIH.
Your advocacy made a difference.
Additionally, the TSC Alliance, along with other nonprofit partners, banded together and signed onto letters in support of the following Acts included in this bill:
- The Accelerating Kids’ Access to Care Act which will reduce red tape for out of state providers treating children with complex medical conditions on Medicaid;
- The Give Kids A Chance Act which includes a reauthorization of the Rare Pediatric Disease Priority Review Voucher Program (RPD PRV); and an extension of Medicare telehealth flexibilities which will make it easier for providers to see patients covered by Medicare in the comfort of their own homes.
We are so grateful for the reinstated and continued support of these critical research programs and support services. This March, we will once again advocate for this funding for FY27 and hope you will join us in our efforts!
To learn how you can get involved in government advocacy, please email grc@tscalliance.org.