International Patient Network

13th International Symposium on Sjögren’s Syndrome (ISSS)

May 19 – 22, 2015 Bergen, Norway

This Symposium brings researchers and clinicians together from around the world to present current clinical findings and research on Sjögren’s Syndrome.

http://www.sicca.org/isss2015/conferenceinfo/conferenceinfo.html

The International Sjögren’s Network Patient Panel
Wednesday, May 20th 2015 17:00-18:00
Part I – Patient Organization Action – Case Study: SSF Clinical Practice Guidelines
Part II – International Sjogren’s Network of Patient Organizations

Meeting of the International Sjögren’s Network (ISN)
Thursday May 21th 2015 Luncheon: 13:00 – 14:00
also was an opportunity for patient groups to meet and discuss how to best work together to increase awareness and services for Sjögren’s patients worldwide.

International Sjögren’s Network (ISN)

In 2009, the International Sjögren’s Network (ISN) was established by 15 organizations that met in Brest, France, at the Xth International Symposium on Sjögren’s.

This group of organizations, each representing various countries, decided to work together by developing the ISN. Below you will find a listing of those organizations that are now part of ISN. We hope you will find this information useful and we encourage you to contact those organizations that you may be interested in helping and supporting.

AUSTRALIA
The Australian Sjögren’s Syndrome Association, Inc. (TASSA)
39 Main Arm Road
Mullumbimby N.S.W. 2482
Phone: +61 (0) 26 684 3704
Website: www.sjogrens.org.au

AUSTRIA
Selbsthilfe-Gruppe Sjoegren-Syndrom
Vera Pekarek c/o La Vera Image Partyservice und
Catering GmbH A-1130 Wien Orangerie Schonbrunn
Schonbrunner SchloBstraBe 47
Phone: +43 664 325 5797
Fax: +43 181 250 4188
Website: www.sjoegren-syndrom.at

CANADA
Sjögren’s Society of Canada (SjSC)
32 Oneida Drive
Brantford, Ontario, Canada N3S 0A8
Phone: +1 888 558 0950
Fax: +1 5197523830
Website: www.sjogrenscanada.org

FINLAND
Sjögrenin syndrooma -yhdistys ry
Kauppakatu 1 A,
60100 Seinajoki, Finland
Phone: +358 6 4232014
Website: www.kolumbus.fi/sjogrenin.syndrooma

FRANCE
Association Francaise du Gougerot-Sjögren et des Syndromes Secs (AFGS)
9 rue du Chateau
67540 Ostwald
France
Email Contact: contact@afgs-syndromes-secs.org
Website: www.afgs-syndromes-secs.org

GERMANY
Selbsthilfe-Netzwerk Sjögren-Syndrom
Elfi Borchers
Schaeferbergweg 11
D-71069 Sindelfingen – GERMANY
Phone: +49 (0) 703 138 6202
Fax: +49 (0) 703 138 2595
Website: www.sjoegren-erkrankung.de

German Self-help network Sjögren-Syndrom

Buchtitel: Sjögren-Syndrom“
Ein Lehrbuch für Patientinnen und Patienten,
Ärzte und Co-Therapeuten“
2. überarbeitete Auflage 2009 von Dr. Christian Tomiak

INDIA
Sjögren’s India (SI)
701, Vatsaraj,
Opposite Shraddha School
Jodhpur Gam Road, Ahmedabad – 380015
Gujarat, India
Phone: +91 792 692 2254 and +91 942 913 3344
Website: www.sjogrensindia.org

ITALY
Associazione Nazionale Italiana Malati Sindrome di Sjögren – A.N.I.Ma.S.S.
Via S. Chiara, 6
37129 Verona – ITALIA
Phone: +39 333 838 6993 or +39 045 958 0027
Fax: +39 045 958 0027
Websites: www.animass.org/sjogren

JAPAN
Japanese Sjögren’s Association for Patients (JSAP)
Division of Hematology and Rheumatology Department of Internal Medicine
Nihon University School of Medicine
30-1 Oyaguchitanimachi
Itabashiku Tokyo 173-8610, Japan
Phone: +81 (0)3 3972 8111 Ext 2402 (Dr Masami Takei)
Fax: +81 (0)3 3972 2893
Email: numtakei@med.nihon-u.ac.jp (Dr. Takei)
Email: sjogren@med.nihon-u.ac.jp (Ms. Yamanoi)
Website: www.maeda-shoten.com/sjogren

THE NETHERLANDS
Nationale Vereniging Sjögrenpatienten (NVSP)
Postbus 4, 3980 CA Bunnik
Phone: +31 (0)30 294 1383
Fax: +31 (0)30 294 8503
Website: www.nvsp.nl

NEW ZEALAND
Sjögren’s Syndrome Association of New Zealand
74 Vipond Road
Stanmore Bay
Whangaparaoa 09032
Phone: +64 (0)9 428 1081
Website: www.sjogrensnewzealand.co.nz

NORWAY
Information Coming Soon

QUEBEC
Association du Syndrome de Sjögren Inc
3155 Rue Hochelaga, Suite 001
Montreal, Quebec, Canada H1W 1G4
Phone: +1 514 934 3666
Fax: +1 514 934 1241
Website: www.sjogrens.ca

RUSSIA
Information Coming Soon

SOUTH KOREA
Korea Sjögren’s Syndrome Support Group (KSSG)
Korea,
Gyeouggi-Do,
Hwaseong-Si,
Annyong-dong 210,
Chung-kwang APT 102-904
Contact: Choi Kyung Seok
Phone: +82 31 225 2529
Website: www.sjogrens.or.kr

SPAIN
Asociación Española Síndrome de Sjögren (AESS)
C/ Cea Bermúdez 14A, Piso 6 Of. 2
28003 Madrid, Spain
Phone: +34 91 535 8653
Fax: +34 91 535 8654
Website: www.aesjogren.org

SWEDEN
Riksföreningen Sjögren’s Syndrom
Box 147, S-233 23 Svedala, Sweden
Phone: +46 4625 5925
Fax: +46 4040 1535
Website: www.sjogrensyndrom.se

SWITZERLAND
Association Romande du syndrome de Sjögren (ARSYS)
Rue du Simplon 30
1800 Vevey, CH
Phone: +41 21 921 2931
Website: www.sjogren.ch

SWITZERLAND
Verein der Deutschschweizer Sjögren Selbsthilfegruppen (VDSS)
Brigitta Buchmann, Länzweg 18, CH-8942
Oberrieden, Switzerland
Phone: 0041 79 483 31 49
Website: www.sjoegren-forum.ch

UNITED KINGDOM
British Sjögren’s Syndrome Association (BSSA)
PO Box 15040
Birmingham B31 3DP
Phone: +44 (0) 121 455 6532
Website: www.bssa.uk.net

UNITED STATES
Sjögren’s Syndrome Foundation
6707 Democracy Boulevard, Suite 325
Bethesda, MD 20817
Phone: +1 301 530 4420
Fax: +1 301 530 4415
Website: www.sjogrens.org