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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
General information:
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.
Contact person:
Australia
Tourette Syndrome Association of Australia
Area covered:
Whole country
General information:
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.
Contact person:
Austria
Österreichische Tourette Gesellschaft
Area covered:
Whole country
General information:
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.
Contact person:
Belgium
Iktic-Jetique Iktic Tourettevereniging België vzw Jetique Association Tourette Belge asbl
Area covered:
Whole country
General information:
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.
Contact person:
Brazil
Astoc St
Area covered:
São Paulo
General information:
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.
Contact person:
Canada
Tourette Canada
Area covered:
Whole country
General information:
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.
Contact person:
China
Tic Disorders & Tourette Syndrome Association of China
Area covered:
Whole country
General information:
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
Contact person:
Dan Sun and Lifang Tang
Czech Republic
ATOS
Area covered:
Whole country
General information:
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.
Contact person:
Denmark
Dansk Tourette Forening
Area covered:
Whole country
General information:
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.
Contact person:
Finland
Suomen Tourette- ja OCD-yhdistys ry
Area covered:
Whole country
General information:
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.
Contact person:
France
Association Française du Syndrome de Gilles de la Tourette (AFSGT)
Area covered:
Whole country
General information:
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.
Contact person:
Germany
Interessen Verband Tic & Tourette Syndrom e.V., (IVTS e. V.)
Area covered:
Whole of Germany
General information:
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:
Contact person:
Germany
LifeTiccer e.V.
Area covered:
Whole country
General information:
Support services:
A website, email service, online forums, newsletter/magazine, school visits, social media groups (Whatsapp/Facebook groups), support group meetings.
Participation in research or mental health:
Contact person:
Germany
Tourette-Gesellschaft Deutschland e.V. (TGD)
Area covered:
Whole country
General information:
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.
Contact person:
Hungary
Magyar Tourette-szindróma Egyesület
Area covered:
Whole country
General information:
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:
Contact person:
Iceland
Tourette-samtökin á Íslandi
Area covered:
Whole country
General information:
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:
Contact person:
Israel
Israel Tourette Association
Area covered:
Whole of Israel
General information:
Support services:
Participation in research or mental health:
Co-operate with researchers e.g. find or advertise for participants.
Contact person:
Italy
AIST Onlus Associazione Italiana Sindrome di Tourette
Area covered:
Whole country
General information:
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.
Contact person:
Italy
Tourette Italia ONLUS
Area covered:
Milan
General information:
Support services:
Participation in research or mental health:
Contact person:
Irene Scagnol
Italy
Tourette Roma Onlus
Area covered:
Centre of Italy
General information:
Support services:
Participation in research or mental health:
Organising lectures/symposia.
Contact person:
Netherlands
Stichting Gilles de la Tourette
Area covered:
Whole country
General information:
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.
Contact person:
New Zealand
Tourette’s Association New Zealand
Area covered:
Whole country
General information:
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.
Contact person:
Norway
Norsk Tourette Forening
Area covered:
Whole country
General information:
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
Contact person:
Poland
Polskie Stowarzyszenie Syndrom Tourette's
Area covered:
Whole country
General information:
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.
Contact person:
Portugal
Associação Portuguesa de Síndrome de Tourette
Area covered:
Whole country
General information:
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.
Contact person:
Spain
ACOVASTTA-Asociación Comunidad Valenciana de Síndrome de Tourette y Trastornos asociados
Area covered:
Comunidad Valenciana and the rest of Spain where people cannot find an active association
General information:
At the moment, we are about 350 members, including children and adults with TS and their families.
We started operating in 2010, thanks to the efforts of relatives and those affected who needed to have a common space, an entity that protects them and identifies them as a collective, to respond to their needs from a therapeutic, educational and legal point.
Address: Calle Veinticinco de Abril 12 puerta 5, València
Support services:
Participation in research or mental health:
Support as part of the treatment, interaction with local or national government regional alliances or networks, involvement in public policy such as creating guidelines for health care professionals regarding diagnosis or treatment
Contact person:
Roxana Antonia Apollonio
Spain
Tourette Spain
Area covered:
Whole country
General information:
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:
Contact person:
Sweden
Riksförbundet Attention
Area covered:
Whole country
General information:
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.
Contact person:
Taiwan
Taiwan Tourette Family association (台灣妥瑞症協會)
Area covered:
Whole country
General information:
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.
Contact person:
Turkey
Türkiye Tik ve Tourette Sendromu Gönüllüleri -TTSG
Area covered:
Whole country
General information:
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.
Contact person:
USA
NJ Center for Tourette Syndrome and Associated Disorders
Area covered:
Whole country
General information:
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.
Contact person:
USA
Tourette Association of America (TAA)
Area covered:
Whole country
General information:
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.
Contact person:
United Kingdom
Tourettes Action
Area covered:
England, Wales and Northern Ireland
General information:
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.
Contact person:
United Kingdom
Tourettes-Syndrome inclusion in the community (T.I.C)
Area covered:
Yorkshire
General information:
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.
Contact person:
United Kingdom-Northern Ireland
Tourettes Alliance
Area covered:
Northern Ireland
General information:
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.
Contact person:
United Kingdom-Scotland
Tourettes Scotland
Area covered:
Scotland
General information:
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.
Contact person:
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