Every few years, the Tourette Association of America (TAA) surveys individuals impacted by Tourette Syndrome and other Tic Disorders to gain extensive insight into the experiences of the community.
The importance of the data gathered by the Impact Survey can not be overstated. The survey provides the statistics which fuel advocacy efforts touching nearly every aspect of life for people living with Tourette Syndrome and other Tic Disorders. The data gathered from the Impact Survey:
- Empowers individuals and their families to secure accommodations at school and at work.
- Underpins the community’s advocacy in the halls of power on Capitol Hill and at the state and local level.
- Provides researchers with the insights they need to direct new research toward improving the patient experience.
- Allows patients and their care teams to secure insurance coverage and support.
2026 Impact Survey Findings
The findings of the 2026 TAA Impact Survey Report underscore the profound effect of Tourette Syndrome and other Tic Disorders on the children and adults who navigate its symptoms and stigma every day. The TAA conducted a web-based survey of 134 questions in the summer of 2025, disseminated electronically via the TAA website, email, and social media. Participants were informed that all data would be collected anonymously and would be used in aggregate to generate this report.
Responder Profile
1368 Total Respondents
754 respondents completed all sections of the survey
- Adult with TS: 60.3% (455)
- Children with TS: 24.3% (183)
- Teens with TS: 116 (15.4%)
The findings summarized in the 2026 Impact Survey Report represent only the tip of the iceberg of the data gleaned across the survey’s 134 questions. We are working closely with members of our Scientific and Medical Advisory Boards and other partners to continue to mine this data for insights into the impact of TS and other Tic Disorders. Stay tuned for specific reports and publications.
2022 Impact Survey Findings
The Tourette Association of America (TAA) conducted a web-based survey (December 2021 – January 2022), disseminated electronically to the Tourette Syndrome and Tic Disorder community via the TAA website, email, and social media.
The survey was also distributed via email through the TAA’s Centers of Excellence to affected individuals and families. Participants were informed that all data would be collected anonymously and would be used in aggregate by the Tourette Association of America (TAA) to communicate to the public and to policy-makers about the impact that Tourette Syndrome and Tic Disorders have on individuals and families. Participants had to be over 18 to take this survey. For those under 18, a parent or caregiver was required to fill out the survey on the child’s behalf. survey on the child’s behalf.
Responder Profile
- Adult with TS: 50.34% (601)
- Adults replying on behalf of a child with TS: 49.66% (593)
Total: 1,194
* Responders who noted that they “do not have TS/Tic Disorder” were routed to the end of the survey bypassing the survey
