About Us About Us Member Organizations Contact Us
About Tuberous Sclerosis Complex  |  How to Start a TSC Organization  |  Find a TSC Organization in Your Area


         A Worldwide Association of
Tuberous Sclerosis Complex Organizations

 

 

 

Africa
_____________________________________________________________________________________

Country: South Africa
Representatives:  
Professor Petrus de Vries, rehana.effendi@uct.ac.za, +27 21 6854103
Loren Leclezio, loren.leclezio@uct.ac.za, +27 21 6854103

 

Asia
_____________________________________________________________________________________

CHINA

Organization: TSC China Alliance 蝴蝶结结节性硬化症罕见病关爱中心
Telephone: 010-56230920 13391565385
Email: tscchina@126.com
Website: www.tscchina.org
Representatives: June Lu, Email: deerjune@gmail.com
Jane Yu, Email: fish3h2o@126.com
Dr. Hongbing Zhang (张宏冰教授)

JAPAN

Organization: The Japanese Society of Tuberous Sclerosis Complex 日本結節性硬化症学会
Address: 2-1-1 Hongo
Bunkyo-ku
Tokyo, Japan 113-8421

〒113-8421
東京都文京区本郷2-1-1 
Telephone: 03-5802-1038
Email: tscres@juntendo.ac.jp
Website: jstsc.kenkyuukai.jp
Representatives: Dr. Okio Hino, Juntendo University (樋野 興夫), ohino@juntendo.ac.jp
Megumi Takei (武井 愛), mtakei.intermedd@sky.bbexcite.jp

TAIWAN

Organization: Taiwan Tuberous Sclerosis Complex (TTSC) Association 社團法人台灣結節硬化症協會
Address: Suite 7, 8th floor,
6 Hengyang Road,
Taipei 10045
Taiwan

10045 台北市中正區衡陽路6號8樓之7
Telephone: 02-23318852
Email: tscare@gmail.com 
Website: www.ttsc.org.tw
Representatives: Robert Luu
  Jerry Yu, Email: jerry.yuu@msa.hinet.net
  Pei-Lung Chen, M.D., Ph.D.

 

Australasia or Oceana
_____________________________________________________________________________________

AUSTRALIA

Organization: Tuberous Sclerosis Australia
Address: 17 Linksview Rd
Springwood NSW 2777
Australia
Telephone: 1300 733 435 (Australia only)
Email: info@tsa.org.au
Website: www.tsa.org.au
Representatives: Debbie Crosby
  Clare Stuart

NEW ZEALAND

Organization: Tuberous Sclerosis Complex New Zealand (TSCNZ)
Address: 11 Riverlea Drive
Katikati 3129    
New Zealand
Telephone: +64 21 154 7017
Email: info@tsc.org.nz  
Website: www.tsc.org.nz
Representative: Helen Willacy

 

Europe
_____________________________________________________________________________________

AUSTRIA

Organization: Tuberöse Sklerose Complex Mitanand
Address: Berg 44 b
A-6840 Götzis
Austria
Website: www.tuberoesesklerose.at
Email: info@tuberoesesklerose.at
Representative: Jeanette Bobos, Email: Bobos@tsdev.org

BELGIUM

Organization: be-TSC vzw
Address: Kapenbergstraat 42
B-2640 Mortsel
Belgium
Telephone: 0032 484 94 18 93
Email: info@betsc.be
Website: www.betsc.be
 Representative: Eva Schoeters, Email: e_schoeters@hotmail.com
 Facebook:

www.facebook.com/groups/275222985926623/

DENMARK

Organization: Dansk Forening for Tuberøs Sclerose (DFTS)
  Hortensiavej 21
8270 Højbjerg
Denmark
Telephone: 1-888-223-2410 (English Toll-Free)  
1 866 558 7278 (Téléphone en Francais)
Website: www.tsdanmark.dk
Representatives:

Liselotte W. Andersen, Tel: 8627 7714, Email: brandersen@webspeed.dk
Pia Gersdorf, Tel: 4390 1366, Email: Piagersdorf@mail.dk

FINLAND

Organization: Finnish TS-association
Telephone: +358-40-8326083
Website: www.tuberoosiskleroosi.fi  
Representative:

Harri Vierimaa
Email: harri.vierimaa@pp.inet.fi


FRANCE

Organization: Association sclérose tubéreuse de Bourneville (ASTB)
Address: 3 rue des Coquelicots
67150 Hindisheim
France
Telephone: +33 9 70 44 06 01
Email: contact@astb.asso.fr
Website: www.astb.asso.fr
Representatives: Guillaume Beaure d'Augères, Email: gba.astb@laposte.net
  Nathalie Rudelle, Email: astb.rudelle@orange.fr

GERMANY

Organization: Tuberoese Sklerose Deutschland e.V. (TSD)
Address: Im Brückfeld 15
65207 Wiesbaden
Germany
Telephone: +49-611-469-2707
+49-611-469-2708
Website: www.tsdev.org
Representatives: Helmut Hehn, Email: Hehn@TSDeV.org
  Angelika Kodat, Email: Angelika@Kodat.net
  Dr. Christoph Hertzberg, Email: Hertzberg@tsdev.org

GREECE

Organization: Tuberous Sclerosis Association of Greece
Address: Timotheou 99-101
162 32 Athens
Greece
Telephone: 0030 210 7600289
Fax: 0030 210 7660989
Email: tsahellas@ath.forthnet.gr
Website: www.pespa.gr
Representatives: Marianna Lambrou, Email: tsahellas@ath.forthnet.gr
  Vassilis Papastavrou, Email: papastavrou_v@yahoo.gr
  Dr. Sotiris Giouroukos

IRELAND

Organization: TSC Ireland
Website: www.TSCireland.org 
Facebook: www.facebook.com/TSCireland

ITALY

Organization: Associazione Sclerosi Tuberosa- AST
Address: Via Nomentana,133 - 00161 Roma
c/o UNIAMO FIMR onlus
Telephone: 0039 338 71 77 673
0039 338 67 47 922
Email: info@sclerosituberosa.org
Website: www.sclerosituberosa.org
Representative: Carla Fladrowski, Email: lacarloski@gmail.com, Telephone: 0039 338 71 77 673

MACEDONIA

Organization: Dajte ni krilja
Address: Institute of Radiotherapy and Oncology Skopje
Vodnjanska 17 1000
Skopje, Macedonia
Telephone: +38975410444
Fax: 0030 210 7660989
Website: www.dajtenikrilja.mk/
Representative: Dr. Milan Risteski, Email: milanristeski@yahoo.com

NETHERLANDS

Organization: Stichting Tubereuze Sclerosis Nederland (STSN)
Address:

Secretariaat STSN
Lange Voorhout 14
4371 TB Koudekerke
The Netherlands

Telephone: +31 (0)6 52 82 46 60
Email:
secretariaat@stsn.nl
Website: www.stsn.nl
Representative:

Jan-Paul Wagenaar, Email: voorzitter@stsn.nl

NORWAY

Organization: Norsk Forening for Tuberøs Sklerose (NFTS)
Address: 2130 KNAPPER
Norway
Telephone: 45 67 27 51
Website: www.nfts.no
Representative: Magne Hultgren

POLAND

Organization: Stowarzyszenie Chorych na Stwardnienie Guzowate
Address: ul. Morska 53A
81-332 Gdynia
Poland
Telephone:

914-227-1740 (English)

Website:

www.stwardnienie-guzowate.eu

Email:

stowarzyszenie.stw.guz@wp.pl

Representatives: Andrzej Chaberka, Email: andrzej.chaberka@wp.pl
Joanna Hensel, Email: henseljoanna@gmail.com (all English correspondence)
Aneta Jurko, Email: ajurko@o2.pl

PORTUGAL

Organization: Associação de Esclerose Tuberosa em Portugal
Address: Rua das Rosas N-34
2750-260 Cascais
Portugal
Telephone: Mobile: +351 916 521 322
Website: www.esclerosetuberosa.org.pt
Email: esclerosetuberosa@gmail.com
Representative: Micaela Rozenberg

RUSSIA

Organization:

TSA Russia

Address: Lazo str. 10/1-51
Moscow 111398
Russia
Telephone: 7-095-309-2452
Representative: Marina Dorofeeva, Email: mdorofeeva@inbox.ru, www.epileptologhelp.ru
Institute of Pediatrics & Pediatric Surgery
Department of Neurology & Epileptology
Taldomskayastr. 2
Moscow 127412
Russia
Telephone: 7-095-487-55-08
Leonid Satanin, Email: lsatanin@nsi.ru

UKRAINE

Organization:          

All-Ukrainian Aid Association for People with Tuberous Sclerosis

Address: Lviv, 79044, P.O.B. 8863
Ukraine
Website:

www.tuberoussclerosis.com.ua

Representative:

Iryna Hladun, tel. +380677053483 (German, Polish)
Email: tscukraine@gmail.com


SERBIA

Organization: Tuberous Sclerosis Association of Serbia
Address: Clinic of Neurology and Psychiatry for Children and Youth
str. Dr. Subotica 6a
11 000 Belgrade, Serbia
Email: nj268j@gmail.com, 2013utss@gmail.com
Representative: Prof. Dr. Nebojsa J. Jovic

SLOVAKIA

Organization: ASTUS – Asociácia tuberóznej sklerózy
ASTUS, n.o.
Address: Záhorácka 5272/21A
90101 Malacky
Slovakia
Telephone: +421 (0)  907 228 284 (mobile); +421 (0) 948 384 886
Website: www.diagnozatsc.sk
Email: astus@astus.sk or info@diagnozatsc.sk
Representative: Bc. Barbora ZAJAČEK (Hlavicová), Email: barbora@astus.sk

SPAIN

Organization: Asociación Nacional de Esclerosis Tuberosa
Address: Calle Camarena nº 119,Bajoº Local
28047 - Madrid
Telephone: Madrid: 917 19 36 85 Barcelona: 619310914
 Email: Madrid: escletuber10@gmail.com
Barcelona:
infobcn@esclerosistuberosa.org 
Representative: Yolanda Palomo, Email: escletuber10@gmail.com  
Merche Gonzalez, Email: mergonpla@gmail.com 

SWEDEN

Organization: TSC Sverige
Telephone: 0046 8 649 18 61 or cell phone number: 0046 70 680 89 54
Website: www.tsc-sverige.se
Representative: Berit Oberg, Email: lennart.berit@telia.com
  Henrik Bergström, Email: henrik@tsc-sverige.se

SWITZERLAND

Organization: STB Suisse
Address:

Case postale 323
3065 Bolligen

Telephone: 031 921 01 06
Email: stbsuisse@postmail.ch
Website: www.stbsuisse.ch
   
Representative
(German Speaking Only):
Doris Friedrich, Email: Doris@bluewin.ch                       

UNITED KINGDOM

Organization: Tuberous Sclerosis Association
Address:

CAN Mezzanine
32026 Loman Street
London, E1 0EH
United Kingdom

Telephone: 0208 690 2288
Email: louise.fish@tuberous-sclerosis.org (Louise Fish, Chief Executive)
Website: www.tuberous-sclerosis.org
Representatives: Dr. Chris Kingswood
Louise Fish

 

North America
_____________________________________________________________________________________

CANADA

Organization: Tuberous Sclerosis Canada Sclérose Tubéreuse
Address: PO Box 35057 Essa Road RO
Barrie, ON 
L4N 5Z2
Website: www.tscanada.ca 
Email: tscanadast@gmail.com 
Representative: Jennifer Flinn, Email: jflinn@outlook.com

MEXICO

Organization: Asociación Mexicana de Esclerosis Tuberosa, A.C. (AMET)
Address: MexCalle 40 N°405B
por 29 y 27 - Colonia Jesús Carranza
CP 97109
Mérida - Yucatán - México
Telephone: 9262097
Website: www.amet.org.mx
Email: amet@amet.org.mx
esclerosistuberosa@hotmail.com
Representatives: Beatríz Negrón Corrales, Email: betynegron@amet.org.mx
  Maria Luisa Pardo, Email: esclerosistuberosa@hotmail.com

USA

Organization: Tuberous Sclerosis Alliance
Address: 801 Roeder Road, Suite 750
Silver Spring MD 20910-4487
USA
Telephone: 1-301-562-9890  
1-800-225-6872 (Toll-Free)
Fax: 1-301-562-9870
Email: info@tsalliance.org
Website: www.tsalliance.org
Representatives: Katie Smith, E-mail: ksmith@tsalliance.org
  Kari Luther Rosbeck, E-mail: krosbeck@tsalliance.org


Middle East
_____________________________________________________________________________________

ISRAEL

Organization: Tuberous Sclerosis Alliance of Israel העמותה הישראלית לטוברוס סקלרוזיס
Address: 4/1 Irit Street
Tel Aviv 68047
Israel
Telephone: +972 3 6595593    +972-(0)50-627-8882 (cell)
Website: www.tsc.org.il 
Representative: Yosef Savion, E-mail: saviony@netvision.net
  Dan Bloom, E-mail: dan@tsc.org.il


South America
_____________________________________________________________________________________

ARGENTINA

Organization: Asociación Argentina de Esclerosis Tuberosa (ARGET)
Telephone: 011 1565474229
Email: asociacionarget@gmail.com 
Websites: www.esclerosis-tuberosa.org and www.asociacionarget.blogspot.com.ar
Representatives:
Constanza Mavroyani
Cynthia Huenuman

BRAZIL

Organization: Brazilian Association of Tuberous Sclerosis
Address: Rua Joaquim Linhares, 30 Anchieta
Belo Horizonte
MG
Brazil
Telephone: (31) 3221 12 44, (31) 3223 78 75       
Email: abet@abet.org.br
Website: abet.org.br/jla2
Representatives: Wesley de Assis Gomes, Email: wesleyag@uol.com.br
  Dr. Luciana A. Haddad, University of São Paulo, Email: grupotsc@usp.br

COLOMBIA

Organization:       
FUNCOLAMEST
Colombian Foundation for Patients with LAM & TSC
Telephone: 886 51 93 
CEL 314 3441730
Website: www.funcolamest.org
Representative: Deicy Ester Mojica Casallas, Email: destulamoca@gmail.com


______________________________________________________________________________________