Tuberous Sclerosis International
Tuberous Sclerosis InternationalA Worldwide Organisation of Tuberous Sclerosis Associations
TUBEROUS SCLEROSISTuberous Sclerosis (TS syn. Epiloia or Bourneville’s disease) is a common genetic condition which produces abnormal growths in the body from birth throughout life. It can severely affect development and health.
Symptoms may include: * Tumours * Epilepsy * Learning Difficulties * Autism * Challenging Behaviour * Renal Complications * A Disfiguring Facial Rash . There is no cure for Tuberous Sclerosis yet, only treatment for the symptoms. TS affects 1 in 7,000 and many people carry the gene without serious consequences other than a 1 in 2 risk of having a more severely affected child.
TUBEROUS SCLEROSIS INTERNATIONALThe Tuberous Sclerosis International was formed in 1986 as a world organisation of national Tuberous Sclerosis Associations.Goals and Objectives of the T.S.I.:
To increase the knowledge of TS throughout the world To stimulate, co-ordinate and originate research on TS To interest statutory international organisations in the welfare of TS sufferers To support national TS associations in their work To initiate the realisation of new TS associations To exchange information of mutual interest between TS associations To raise funds to support the goals and objectives of the T.S.I.
TSI REPRESENTATIVESAUSTRALIA
Website ATSS: http://www.atss.org.au/members/
E-mail: info@atss.org.au
Australasian Tuberous Sclerosis Society,
13 Linksview Road
SPRINGWOOD NSW 2777
AUSTRALIA
Telephone: 1300 733 435 (Australia only)
BELGIUM
Website TSIV: http://www.tsiv.be/
E-mail: info@tsiv.be (Tina Opdebeeck)
Mrs. Tina Opdebeeck
Temse
BELGIUM
Phone: + 32 3 711 11 31
CANADA
Tuberous Sclerosis Canada Sclerose Tubereuse (TSCST)
E-mail: raymarco@shaw.ca
Ray Marco, Secretary
P.O. Box 332
Dunmore, Alberta
CANADA T0J 1A0
Phone (toll free): 1-800-347-0252
CZECH REPUBLIC
Dr Borek Petrak
Lumieru 24
152 00 Praha 5
CZECH REPUBLIC
DENMARK
DFTS
Mrs. Pia Gersdorf Damgaard
Mønstedvej 26
2670 Greve
DENMARK
Tlf : 4390 1366
EIRE
Mr. & Mrs N. Manning
20 Portmarnock Park
Portmarnock
Co Durblin 6
EIRE
ESPANA
Alfredo Guerisoli
Asociacion Andaluza de Esclerosis Tuberosa
Trinquete 16
Urb Don Miguel
Rincon De La Victoria
MALAGA ESPANA
MALAGA: Inmaculada Molina (Presidenta) 95 - 2407831
JAEN: Juani Garrido (Vicepresidenta) 953 - 681639
SEVILLA: Alvaro Escudero (Tesorero) 95 - 4275692
Tlfno: 95 - 2601820
Fax: 95 - 2603547
Association Tuberous Esclerosis MADRID
Yolanda Palomo (President)
Camerena 119
28047 Madrid
Email: escletuber@wanadoo.es
FINLAND
Esko Siljamaki
Arotie/A/
SF 01820 Klaukkala
FINLAND
Eija Gaily, MD, PhD
The Hospital for Children and Adolescents
Lastenlinnantie 2
00250 Helsinki
FINLAND
Tel. +358-9-471 80420
Fax.+ 358-9-471 80688
E-mail. eija.gaily@hus.fi
FRANCE
A.S.T.B. FRANCE
Céline BERTRAND-HARDY
28, rue Barrault
75013 PARIS
Téléphone: + 01 43 67 49 19
Mail: astb.siege@yahoo.fr
FRANCE
GERMANY
Tuberoese Sklerose Deutschland e.V. (TSD)
website: www.tsdev.org
Chair: Helmut Hehn
eMail: Hehn@TSDeV.org
Office: Sandra Hoffmann
Emanuel-Geibel-Str. 22
65185 Wiesbaden
Tel. +49-177-7382941
Fax +49-611-3414336
eMail: Hoffmann@TSDeV.org
International contacts:
Karin Mayer
PhD Laboratory for Medical Genetics
Lochhamer Str. 29
82152 Martinsried
Tel: +49-89-8955780
Fax: +49-89-89557878
e-mail: mayer@TSDeV.org
GERMANY
GREECE
e-mail: tsa@ath.forthnet.gr
TSA Greece: aris@serifos.bio.auth.gr
Mrs Marianna Lambrou
99-101 Timotheou Street
162 - 32 ATHENS
Tel :30-1-76 60 989
Fax :30-1 -72 62 481
GREECE
INDIA
Mr Kamlesh Shah
86 Mount Unique
62-A Pedder Road
BOMBAY 400 026
INDIA
ISRAEL
ITALY
A.S.T. Associazione Sclerosi Tuberosa
Via Anagnina Nuova, 13 - c/o Villaggio “Eugenio Litta”
00046 GROTTAFERRATA (RM)
Italy
Tel./Fax (+39) 06 9415001 - 335-8282000
E-mail info@sclerosituberosa.it
AINE
Sr Paolo Lotti
c/o Fratellanza Popolare
Via di Peretola, 68
50145 FIRENZE
ITALY
JAPAN
Akiko Yokohama
Secretary TS Tubasanokai c/o Toy Library
National Childrens Hospital 3-35-31
Taishido Setagaya-Ku
TOKYO 154
JAPAN
E-mail TS families group manager: sasaki-t@rtri.or.jp
Toshiaki Sasaki
2-25-11 Mitsuidai
Hachioji City 192
TOKYO
JAPAN
MALAYSIA
Kay Teoh
3 Lorong 16/3B
Petaling Jaya 46350
Selangor Darul Ehsan
MALAYSIA
MEXICO
ASOCIACION MEXICANA DE ESCLEROSIS TUBEROSA AC.
WEB www.amet.org.mx
e-mail: amet@amet.org.mx
Direccion: calle 38 No 454 x 29 y 31
Col. Jesus Carranza Cp. 97109
Merida, Yucatan, Mexico
tel (999)9263111
Fax (999)9277229
TSI-representative in Mexico:
Betty Negrón de Riera
Calle 29a #265 entre 28 y 30
Col. Alemán C.P. 97148
Mérida, Yucatán, México
tel (999)9480692
e-mail: bety_negron@amet.org.mx
NETHERLANDS
Mrs. Marlies van Zuilen
STSN-homepage: http://www.stsn.nl
Send e-mail to STSN: info@stsn.nl
Couwenhoven 53-09
3703 ES Zeist
NEDERLAND
Tel.: ++31 30 7070554
NEW ZEALAND
Mr & Mrs Pat Coakley
New Zealand TS Support Group
36 Sailsbury Road
Birkdale
Auckland 1310
NEW ZEALAND
Tel/Fax: 64 9 483 5392
NORWAY
Norsk Forening for Tuberøs Sklerose
Sekretariatet
Att: Torbjørn Hodne
N-4532 ØYSLEBØ
NORWAY
Telefon: +47 38287627 Fax: + 47 38287676
E-post: Torb-ho@online.no
POLAND
Dr Sergiusz Jozwiak
Dept of Child Neurology
Centrum Zdrowia Dziecka
A1. Dzieci Polskich 20
04-736 Warszawa
POLAND
Polish TS Assn
Mr. Kazimierz Dyka
u1.Czachowskiego 23/9
27-600 Sandomierz
POLAND
LA REUNION
Bruno Maillot
ARAFASTB
13 Chemin A. Roussin-
La Bretagne
97490 SAINTE CLOTILDE
LA REUNION
ROMANIA
Dr.Simona Visan
Romania
Bucuresti
Str.Stefan cel Mare nr. 60
Bloc 41, apt.7, sector2
Tel/Fax:+40-1-2106862
RUSSIA
Svetlana Selina
President TSA Russia
Lazo str. 10/1-51
Moscow 111398
tel.: 7-095-309-2452
Marina Dorofeeva
Institute of Pediatrics & Pediatric Surgery
Department of Neurology & Epileptology
Taldomskayastr. 2
Moscow 127412
Russia
tel.: 7-095-487-55-08
E-mail: neurol@pediatr.mtu-net.ru
SERBIA
Professor Dusan Vranjesevic
Clinic for Child Neurology & Psychiatry
Dr. Subotica St. 6a
BELGRADE
SERBIA
SWEDEN
SFTS
Svenska föreningen för Tuberös skleros
Berit Oberg
Sten Bergmansvag 61
121 46 Johanneshov
Sweden
Tel 08 - 649 18 61
e-mail: lennart.berit@telia.com
Eva Nordin-Olson
SFTS
Ostnor 4438
792 95 MORA
SWEDEN
THAILAND
Jarurin Pitanupong M.D.
Department of Psychiatry
Faculty of Medicine
Prince of Songkla University
Hat Yai
Songkhla 90112
TURKEY
Prof. K Kutlu
Professor of Pathology
Trakya University Medical Faculty
Edirne
TURKEY
UNITED KINGDOM
Mr & Mrs TE CarterTSA site: www.tuberous-sclerosis.org
Send email to Diana Sanson TSA: support@tuberous-sclerosis.org
Send email to Anne Carter: appeals@tuberous-sclerosis.org
Tuberous Sclerosis Association
PO Box 12979
Birmingham
B45 5AN ENGLAND
USA
Dr Vicky Holets Whittemore, Ph.D.
Tuberous Sclerosis Alliance: www.tsalliance.org
Send e-mail to NTSA: vwhittemore@tsalliance.org
801 Roeder Road, Suite 750
Silver Spring
MD 20910 USA
Tel: 301-562-9890
Fax: 301-562-9870
Toll free: 800-225-6872
Secretariat TSI:
Secretariaat STSN
Couwenhoven 53-09
3703 ES Zeist
The Netherlands
phone : + 030-7070554
e-mailadres: info@stsn.nl
Bankers TSI: Rabobank account number: 11.89.41.127 (STSN)
For a new search for Health & Medicine you can use:
TS and Genetic research (The Cardiff-Rotterdam Tuberous Sclerosis Mutation Database)
links for the new TSC1 and TSC2 Variation Databases:
TSC1 Variation Database: http://chromium.liacs.nl/LOVD2/TSC/home.php?select_db=TSC1
TSC2 Variation Database: http://chromium.liacs.nl/LOVD2/TSC/home.php?select_db=TSC2
This page is maintained by Jos Scheurink Last modified June, 9th, 2008
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