Advocate for Tourette

Public Policy and Tourette

The Tourette Association of America’s Public Policy office advocates for policies that support the Tourette Syndrome and Tic Disorder community. We represent the interests of hundreds and thousands of people across the country before Congress, the White House and federal agencies. A crucial part of Advocacy is the network of Chapters and members who work with our office to communicate directly with their elected officials at the federal level.

The issues that the organization monitors and voices views on include: education and disabilities, general health care, funding of research, and prevention of genetic and other forms of medical discrimination. As a member of several larger Health and Education Coalitions, the Tourette Association advocates for or against specific legislation that would significantly affect people with Tourette and Tic Disorders. The Public Policy Office lobbies specifically for Tourette Syndrome and leads Tourette specific legislative Issues.

The Tourette Association has taken the lead in developing the Tourette Syndrome Caucus made up of members of Congress.

Policy Priorities

• Support $2.5 million in continued funding in Fiscal Year 2027 (FY27) LHHS-Appropriations for the Public Health Education and Research Program on Tourette Syndrome at the Centers for Disease Control and Prevention (CDC).
• Support sustained FY27 funding for medical research at the National Center on Birth Defects and Developmental Disabilities, National Institute of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS), and National Institute of Mental Health (NIMH).
• Co-sponsor and support passage of the Safe Step Act (H.R. 5509/S. 2903) to improve step therapy protocols and ensure patients are able to safely and efficiently access the best treatment for them.

Policy Updates

On February 3, Congress passed the FY 26 federal budget and President Trump signed it into law. The result is a major victory for Tourette Syndrome and Tic Disorder programs, including full funding ($2.5 million) for the CDC’s TS Public Health Education and Research Program.

In addition, the National Center on Birth Defects and Developmental Disabilities, the National Institutes for Health’s (NIH) National Institute for Neurological Disorders and Stroke (NINDS), and the National Institute of Mental Health all received strong funding levels.

Lastly, telehealth flexibilities have been extended until December 31, 2027.

This a major win for our community, and it would not have been possible without your advocacy! Thank you for your support, and we look forward to our continued partnership in 2026.