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Directory of Tourette Syndrome Patient Associations
An overview of the most important services and contact details of TS Patient Associations around the world; get to know what the organisation in your respective country has to offer. Professionals can easily share this information with their patients and open the way to support in an accessible manner.
If you are a Patient Association representative and wish to update any of the details below, or to be included in this directory, please submit your content via this online form, or contact us directly here.
We appreciate your help in making this online directory a useful tool for patients, their families and professionals all around the world!
A very special thank you to Dr Seonaid Anderson and Dr Annet Heijerman who have worked tirelessly on compiling information from all around the world and have meticulously drafted this valuable database.
Argentina
Asociación Argentina para el Síndrome de Tourette
Area covered:
Whole country and Latin American countries
Support services:
Phone helpline, e-mail service, YouTube channel, private social media groups, live chat, brochures/flyers/books, school visits, activities/weekends/meet-ups.
Participation in research or mental health:
Funding for research, carrying out and publishing own research, organising lectures/symposia/events for professionals, involvement in creating guidelines for health care professionals.
Person to contact:
Australia
Tourette Syndrome Association of Australia
Area covered:
Whole country
Support services:
Website, phone helpline, email service, online forums, newsletter/magazine, school visits, support group meetings, providing training for professionals, sales of products (t-shirts, pens, badges), YouTube channel, private social media groups (Whatsapp/Facebook groups), brochures/flyers/books, an overview of TS specialists, a national camp program, school in-service and peer to peer education program.
Participation in research or mental health:
Carry out our own research, co-operate with researchers e.g. find or advertise for participants, organise lectures/symposia/events for professionals.
Person to contact:
Austria
Österreichische Tourette Gesellschaft
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, private social media groups, brochures/flyers/books, school visits, visits to employers,support group meetings, activities/weekends/meet-up's, training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia/events for professionals, offering support as part of the treatment.
Person to contact:
Belgium
Iktic-Jetique Iktic Tourettevereniging België vzw Jetique Association Tourette Belge asbl
Area covered:
Whole country
Support services:
Website, e-mail service, online forums, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-ups, overview of TS specialists.
Participation in research or mental health:
Carrying out own research, cooperation in research, involvement in creating guidelines for health care professionals.
Person to contact:
Brazil
Astoc St
Area covered:
São Paulo
Support services:
Website, phone helpline, e-mail service, private social media groups, live chat, school visits, support group meetings.
Participation in research or mental health:
Funding research, cooperation in research, organising lectures/symposia, support as part of the treatment.
Person to contact:
Canada
Tourette Canada
Area covered:
Whole country
Support services:
A website, a general phone line, email service, online forums, private social media groups (WhatsApp/Facebook groups), newsletter/magazine, brochures/flyers/books, school visits and employers, support group meetings, activities/weekends/meet-up's, providing training for professionals, sales of products (t-shirts, pens, badges), an overview of TS specialists in the country.
Participation in research or mental health:
Have done so in the past.
Person to contact:
China
Tic Disorders & Tourette Syndrome Association of China
Area covered:
Whole country
Support services:
Website, email service, online forums, brochures/flyers/books, support group meetings, other
Participation in research or mental health:
Support as part of the treatment
Person to contact:
Dan Sun and Lifang Tang
Czech Republic
ATOS
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, private socialmedia groups, brochures/flyers/books, school visits, support group meetings, providing training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia, support as part of the treatment.
Person to contact:
Denmark
Dansk Tourette Forening
Area covered:
Whole country
Support services:
A website, email service, school visits, support group meetings, activities/weekends/meet-up's, social media (Facebook), brochures/flyers.
Participation in research or mental health:
Co-operate with researchers e.g. find or advertise for participants, organize lectures/symposia/events for professionals, support as part of the treatment.
Person to contact:
Finland
Suomen Tourette- ja OCD-yhdistys ry
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, private social media groups,newsletter/magazine, brochures/flyers/books, school visits, support group meetings, activities/weekends/meet-ups, summer camps for families.
Participation in research or mental health:
Cooperation in research, evaluating research, organising lectures/symposia.
Person to contact:
France
Association Française du Syndrome de Gilles de la Tourette (AFSGT)
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-ups, overview of TS specialists.
Participation in research or mental health:
Funding for research, cooperation in research.
Person to contact:
Germany
Interessen Verband Tic & Tourette Syndrom e.V., (IVTS e. V.)
Area covered:
Whole of Germany
Support services:
A website, email service, support by telephone hotline, newsletter/magazine, school visits, support group meetings, activities/weekends/meet-up's, private social media groups (Whatsapp/Facebookgroups), brochures/flyers/books.
Participation in research or mental health:
Person to contact:
Germany
Tourette-Gesellschaft Deutschland e.V. (TGD)
Area covered:
Whole country
Support services:
A website, email service, newsletter/magazine, school visits, support group meetings, activities/weekends/meet-up's, private social media (Facebook, Twitter), brochures/flyers/books, an additional site (www.ticerkrankung.de) providing an overview of clinicians, doctors, therapists, support groups etc.
Participation in research or mental health:
Co-operate with researchers e.g. find or advertise for participants, organize lectures/symposia/events for professionals, support as part of the treatment.
Person to contact:
Hungary
Magyar Tourette-szindróma Egyesület
Area covered:
Whole country
Support services:
Website, e-mail service, YouTube channel, private social media groups, brochures/flyers/books, school visits, support group meetings, activities/weekends/meet-ups.
Participation in research or mental health:
Person to contact:
Iceland
Tourette-samtökin á Íslandi
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service,private social media groups, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, overview of TS specialists.
Participation in research or mental health:
Person to contact:
Italy
AIST Onlus Associazione Italiana Sindrome di Tourette
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, YouTube channel, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, providing training for professionals, overview of TS specialists.
View social spot (awareness ad)
Participation in research or mental health:
Organising lectures/symposia, involvement in creating guidelines for health care professionals.
Person to contact:
Italy
Tourette Italia ONLUS
Area covered:
Milan
Support services:
Website, email service, online forums, YouTube channel, newsletter/magazine, brochures/flyers/books, school visits, visits to employers.
Via San Pietro 3, Seregno
20831 (MB) Italy
Participation in research or mental health:
Person to contact:
Irene Scagnol
Italy
Tourette Roma Onlus
Area covered:
Centre of Italy
Support services:
Website, e-mail service, YouTube channel, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, support group meetings, legal services.
Participation in research or mental health:
Organising lectures/symposia.
Person to contact:
Netherlands
Stichting Gilles de la Tourette
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, YouTube channel, public & private social media groups, newsletter/magazine, brochures/flyers/books, support group meetings, activities/weekends/meet-ups, overview of TS specialists, media campaigns/public awareness/anti-stigma campaigns.
Participation in research or mental health:
Carrying out own research, cooperation in research.
Person to contact:
New Zealand
Tourette’s Association New Zealand
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, YouTube channel, private social media groups, newsletter/magazine, brochures/flyers/books, support group meetings, activities/weekends/meet-up's, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, involvement in creating guidelines for health care professionals.
Person to contact:
Norway
Norsk Tourette Forening
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, private social media groups, newsletter/magazine, brochures/flyers/books, support group meetings, activities/weekends/meet-up's, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organise lectures/symposia/events for professionals
Person to contact:
Poland
Polskie Stowarzyszenie Syndrom Tourette's
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, private social media groups, newsletter/magazine, brochures/flyers/books, support group meetings, activities/weekends/meet-up's, overview of TS, training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, support as part of treatment.
Person to contact:
Portugal
Associação Portuguesa de Síndrome de Tourette
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, magazine, brochures/flyers, support group meetings, activities/weekends/meet-up's, overview of TS, training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia.
Person to contact:
Spain
Tourette Spain
Area covered:
Whole country
Support services:
In Spain there are multiple support organisations; the Spanish associations are at the moment (in 2019) working all together in creating a National Federation. There are in fact 7 different regional associations.:
-Asociación del Principado de Asturias de Síndrome de Tourette y Trastornos Asociados (Apastta)-URL, Email
-Asociación AMATOU-Twitter
-AMPASTTA-URL
-Associación Tourette Catalunya, URL
-ACOVASTTA (Asociación Comunidad Valenciana de Síndrome de Tourette y Trastornos Asociados), URL
-Astta (Andalucia), URL
-Tourette Euskadi (PaisVasco), URL
Participation in research or mental health:
Person to contact:
Sweden
Riksförbundet Attention
Area covered:
Whole country
Support services:
The organization also represents ADHD and ASD.
Website, magazine, brochures/flyers, support group meetings, activities/weekends/meet-up's, overview of Tourette's, training for professionals, overview of TS specialists.
Participation in research or mental health:
Carrying out own research, involvement in public policy.
Person to contact:
Taiwan
Taiwan Tourette Family association (台灣妥瑞症協會)
Area covered:
Whole country
Support services:
Website, online forums, newsletter/magazine, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, training for professionals, brochures/flyers/books, an overview of Tourette's specialist sand unicycle training and campaign.
Participation in research or mental health:
Support as part of the treatment, cooperation in research, carry out our own research, co-operate with researchers e.g. find or advertise for participants, organise lectures/symposia/events for professionals.
Person to contact:
Turkey
Türkiye Tik ve Tourette Sendromu Gönüllüleri -TTSG
Area covered:
Whole country
Support services:
Website, magazine, brochures/flyers, support group meetings, activities/weekends/meet-up's, overview of Tourette's, training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research.
Person to contact:
USA
NJ Center for Tourette Syndrome and Associated Disorders
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, YouTube channel, private social media groups (Whatsapp/Facebook groups), newsletter/magazine, brochures/flyers/books, school visits, activities/weekends/meet-up's, training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia/events for professionals, involvement in public policy.
Person to contact:
USA
Tourette Association of America (TAA)
Area covered:
Whole country
Support services:
Website, phone helpline, e-mail service, online forums, YouTube channel, private social media groups (Whatsapp/Facebook groups), newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, training for professionals, overview of TS specialists.
Participation in research or mental health:
Funding for research, cooperation in research, evaluation of research, organising lectures/symposia/events for professionals, involvement in public policy.
Person to contact:
United Kingdom
Tourettes Action
Area covered:
England, Wales and Northern Ireland
Support services:
Website, phone helpline, e-mail service, Live Chat on website, YouTube channel, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, providing training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia.
Person to contact:
United Kingdom
Tourettes-Syndrome inclusion in the community (T.I.C)
Area covered:
Yorkshire
Support services:
Website, phone helpline, e-mail service, online forums, YouTube channel, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, providing training for professionals, overview of TS specialists.
Participation in research or mental health:
Cooperation in research, organising lectures/symposia.
Person to contact:
United Kingdom-Northern Ireland
Tourettes Alliance
Area covered:
Northern Ireland
Support services:
Website, e-mail service, online forums, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's.
Participation in research or mental health:
Cooperation in research.
Person to contact:
United Kingdom-Scotland
Tourettes Scotland
Area covered:
Scotland
Support services:
Website, e-mail service, online forums, private social media groups, newsletter/magazine, brochures/flyers/books, school visits, visits to employers, support group meetings, activities/weekends/meet-up's, providing training for professionals.
Participation in research or mental health:
Cooperation in research.
Person to contact:
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