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

Patient Panel - International Sjogren’s Network
Wednesday, May 20th 2015 17:00-18:00
Bergen, Norway  
Part I – Patient Organization Action – Case Study: SSF Clinical Practice Guidelines 
Part II – International Sjogren’s Network of Patient Organizations
Panel Moderated by Steven Taylor, SSF CEO 

Meeting of the International Sjögren’s Network (ISN)
Thursday May 21th 2015  Luncheon: 13:00 – 14:00
Bergen, Norway  

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 symposium, which brings together researchers and clinicians from around the world, also was an opportunity for patient groups to meet and discuss how best to collectively work together to increase awareness and services for Sjögren's patients worldwide.

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.

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

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

Sjögren's Society of Canada (SjSC)
32 Oneida Drive
Brantford, Ontario, Canada N3S 0A8
Phone: +1 416 943 8150
Fax: +1 5197523830
Website: www.sjogrenscanada.org

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

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

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

L'AFGS est la seule association française de malades exclusivement consacrée aux personnes souffrant d'un syndrome de Gougerot Sjögren. Elle a été créée en 1990 et reconnue d'utilité publique en 2004. Elle compte désormais plus de 2500 membres et est gérée par des malades sur la base du bénévolat.

Ses objectifs sont d'informer les malades et de leur apporter le soutien moral dont ils ont besoin d'une part, de soutenir la recherche médicale d'autre part. Elle a ainsi, depuis 1999, financé des prix de thèse et contribué à financer des projets de recherche "à hauteur de 200 000 Euros".


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

The self-help network Sjögren-Syndrom is a private and independent action group.
A first meeting of the Sjögren-Syndrom affected people took place in Mannheim  in
1999 – at Mrs. Johanna Götzinger’s suggestion. It provided an exchange of experien-
ces. In 2000 Mrs Götzinger arranged the homepage www.sjoegren-erkrankung.de – with
available information.

In 2001 the self-help network Sjögren-Syndrom was established – with persons to contact all over Germany. 2002 the first German Sjögren-Day/Meeting took place in Münster, organized by the
faculty of medicine of the Wilhelms University – in cooperation with the self-help
network Sjögren-Sydrom.Since then Sjögren-Days/Meetings are regularly carried out in German speaking countries ( Austria, Switzerland ) – as joint ventures of faculties of medicine and rheumatism centres in Germany.

The self-help network provides the following range of activities:
> information about the Sjögren-Syndrom disease,
> promoting the exchange of experiences among sufferers,
> providing reports of hospitals and experts,
> organising the German Sjögren-Syndrom Day/Meeting,
> creating national and international Sjögren-Syndrom contacts,
> arranging medical consultation with Dr. med. Christian Tomiak,
> updating the homepage www.sjoegren-erkrankung.de.

Textbook ( Dr. Christian Tomiak): “Sjögren-Syndrom”; a textbook for patients, medicines and co-therapists; 2nd edition 2009,  ( Verlag hier einfügen!)

Die Selbsthilfe Sjögren-Syndrom ist eine private und unabhängige Initiative. Ein erstes Treffen zum Erfahrungsaustausch von Sjögren-Betroffenen aus ganz Deutschland fand 1999 auf Anregung von Johanna Götzinger in Mannheim statt. Im Jahr 2000 erstellte Frau Götzinger die Homepage www.sjoegren-erkrankung.de mit allen verfügbaren Informationen über das Sjögren-Syndrom. 2001 wurde das Netzwerk „Selbsthilfe-Netzwerk Sjögren-Syndrom“ gegründet mit Ansprechpartnerinnen in der gesamten Bundesrepublik. 2002 fand der 1. Deutsche Sjögren-Tag in Münster statt, veranstaltet von der Medizinischen Klinik der Wilhelms-Universität Münster in Verbindung mit dem Selbsthilfe-Netzwerk Sjögren-Syndrom. Seither finden regelmäßig für den gesamten deutschsprachigen Raum (Österreich, Schweiz) Sjögren-Tage als Gemeinschaftsveranstaltung mit verschiedenen Universitätskliniken und Rheumazentren in Deutschland statt. Die Angebote der Selbsthilfe Sjögren-Syndrom sind:

  • Informationen über das Krankheitsbild Sjögren
  • Austausch unter Betroffenen
  • Berichte von Fachärzten und Kliniken
  • Durchführung von Deutschen Sjögren-Tagen
  • Pflege von nationalen und internationalen Sjögren-Kontakten
  • Medizinische Beratung Dr. med. Christian Tomiak
  • Laufende Aktualisierung der Homepage: www.sjoegren-erkrankung.de

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

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

Sjögren's India (SI), managed by patient volunteers, is dedicated to enabling patients and their families to 'Live Well with Sjögren's Syndrome (SS)'. SI works through local groups called Sjögren's Support Group (SSG) for empowering patients through education, creating better public awareness and providing a forum for interaction with healthcare professionals. Support in terms of counseling, lifestyle management tips etc. is extended to patients/families through personal/group, telephonic and virtual interaction. Patient Education resources are available in Hindi, Marathi and Gujarati besides English.



Irish Sjögren's Support Group
Contact: Maebh Gallagher
Tel: 004412841644
e-mail: sjogrens.ie@gmail.com 

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

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


Nationale Vereniging Sjögrenpatienten (NVSP)
Postbus 6
Phone: 0346 - 55 63 76
Fax: 0346 - 55 42 76
Website: www.nvsp.nl

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

Postboks 2653 Solli
0203 Oslo
Phone: +22 54 76 00
Fax: + 22 43 12 51
Website: www.revmatiker.no

Landsledelsen for Sjøgrens syndrom ønsker deg velkommen til
hjemmesiden vår!

Sjøgrenarbeidet startet i 1998.
Vi er organisert under NOrsk Revmatikerforbund med en landsledelse, fylkesgrupper og fylkeskontakter.

Hva vi arbeider med
Landsledelsen arbeider med saker som angår medlemmer med Sjøgrens syndrom. Vi har hatt fokus på saker som tårevæske på blå resept, fri tannbehandling, fri fysioterapi og NRFs vedtekter. Vi arbeider også med å spre informasjon om sykdommen

Landsledelsen 2015-16
Anne-Britt Svensen
Mobil: 90 65 29 36
E-post: brsvense@online.no

Helle Steinsvik Johansen
Mobil: 40 31 57 67
E-post: helstjo@hotmail.com

Eva Thorkildsen
Mobil: 93 82 29 14
E-post: evthorki@mac.com

Lotta Svartdahl
Mobil: 48 19 27 70
E-post: lotta@svartdahl.no

Karin Rognmo Mellem
Mobil: 90 98 94 05
E-post: karin@mellem-motor.no 

Information Coming Soon

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

Description: We have only one group for Sjögren’s patients in Korea, and that's us. There are over 100 patients registered with us as members and some physicians and specialists are serving as medical advisers. We publish quarterly newsletters and hold meetings several times every year. We also do group purchasing for patients once or twice a year. Our official website is www.sjogren.or.kr which was established in 2000 by the group's president whose wife is a Sjögren’s patient. It originally started as his personal blog, sharing how his family is coping with his wife's illness and how they are raising their kids, but it has evolved into the official site for the Korea Sjögren’s Syndrome Support Group.

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


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


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

L'association romande du syndrome de Sjögren a été créée en 2007. Elle est située en Suisse francophone et pourrait s'étendre aux autres régions linguistiques du pays.

Elle a pour but de:

  • mettre en contact les personnes atteintes
  • proposer une écoute, un soutien et des informations
  • contribuer à la recherche scientifique et médicale
  • faire connaître cette maladie au public 

Das schweizerische, französischsprachige Sjögren-Syndroms Verein wurde am 2007 gegründet. Es liegt in der französischen Schweiz und könnte sich durch die andere Sprachregionen des Landes erweitern.

Unsere Ziele sind:

  • Leute die bei Sjögren befallen sind, in Kontakt zu stellen
  • Unterstützung, Abhören, Informationen vorschlagen
  • Zur medizinischen Forschung beizutragen
  • Diese Krankheit mitzuteilen 

The Swiss Sjögren's Association was founded in 2007. It is located in the French-speaking part of Switzerland and could extend to the others linguistic regions.

Its goals are:

  • to connect people with this condition
  • to offer listening, support and information
  • to contribute to medical research
  • to increase public awareness of this condition


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

The Sjoegren-forum has he following aims:

  • Tipps for better quality of life
  • Addresses of specialized medical doctors
  • Questions in the forum answered by specialists
  • News about meetings in Switzerland and other countries
  • Organizations of local meetings in Switzerland
  • Information about Sjögren’s
  • International relations

The forum was founded on November 17th 2005 by Brigitta Buchmann. On April 11th 2006 the first SjS-meeting took place in Zurich. In the meantime the SjS-group met already 26 times: we organize meetings every three months, always in another city in Switzerland.

Brigitta Buchmann gründete das Sjoegren-Forum am 17. November. 2005.
Schon kurze Zeit später, am 11. April 2006, fand das erste SjS-Treffen in Zürich statt.
Inzwischen hat sich der Verein der Deutschschweizer Sjögren Selbsthilfegruppe am 18. 07. 2013
26 Mal getroffen. Die Treffen finden vierteljährlich in einem anderen Kanton der Schweiz statt.

Das Sjoegren-Forum verfolgt folgende Ziele:
- Tipps für eine bessere Lebensqualität
- Veröffentlichung von Adressen spezialisierter Ärzte
- Zugriff im Forum auf die Spezialärzte um Fragen stellen zu können
- Publikation wichtiger Neuigkeiten und Veranstaltungen
- Organisation von regionalen Treffen der Selbsthilfegruppen
- Information der Öffentlichkeit über die SjS-Erkrankung
- Pflege internationalen Beziehungen

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


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

Description: The Sjögren's Syndrome Foundation in the United States was founded in 1983 by a patient, Elaine Harris, who wanted to gain recognition for Sjögren’s while also helping her fellow Sjögren's patients. Today, this organization raises over $2 Million annually, funds over $300,000 in research grants each year and maintains 87 support groups throughout the United States. The Foundation staff and volunteers are committed to increasing awareness of this common, yet unheard of disease.