CARE Act for Tourette Syndrome

The CARE Act would require the Director of the NIH to expand, intensify, and coordinate programs and activities regarding scientific and clinical research on Tourette. This legislation is being led nationally by the Tourette Association in partnership with New Jersey Center on Tourette Syndrome (NJCTS) at Rutgers. (H.R. 427/S.2114) The CARE Act represents an exciting opportunity to call on our government to stimulate research that will increase the understanding of and improve treatments for Tourette Syndrome. The Tourette Association is collaborating with the New Jersey Center for Tourette Syndrome and Associated Disorders to ensure that this initiative receives sponsorship across the country.

    • Originally introduced by New Jersey Congressman Albio Sires in December 2011 and reintroduced in 2015, along with a companion bill introduced in the Senate by New Jersey Senator Robert Menendez, the CARE Act would amend the Public Health Service Act to expand, intensify and coordinate the programs and activities of the National Institutes of Health regarding scientific and clinical research into Tourette Syndrome. The CARE Act does not authorize any incremental funding for TS, but rather reallocates existing funds towards new programs to more effectively research and collect data on TS.

The act would also require the NIH to award grants and contracts to academic, healthcare and other institutions to support the establishment of four to six Collaborative Tourette Syndrome Research Centers in different regions of the country. These centers will host high-level, concerted, scientific and clinical research into TS and related disorders.

Lastly, it would facilitate the collection of important data on various aspects of TS, which can be used to provide a better understanding of the disorder, and assist with the development of programs and strategies aimed at advancing the TS research agenda.

Similar government mandates have led to critical advances in other disorders. We believe the CARE Act will have significant impact in the field of TS. The Tourette Association is urging members to write to their local elected officials asking them to support the bill, with concerted efforts to do so during national Tourette Syndrome National Advocacy Day and Awareness Month, May 15 through June 15.