In 2009, the International Sjögren's Network (ISN) was established by 15 organizations that met in Brest, France, at the 10th 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.
ARASS Asociasiòn Rosarina De Autoayuda Para
Pacientes del Sìndrome De Sjogren
Facultad de Ciencias Mèdicas Santa Fe 3.100
Cuas 2 Box 1
Ciudad de Rosario Provincias de Santa Fe, Argentina
Phone: +54 (0)341152594121
Email Contact: sjogrenrosario [at] gmail [dot] com (sjogrenrosario[at]gmail[dot]com)
Website: http://ssjogrenrosario.blogspot.com.ar
Selbsthilfe-Gruppe (La Vera) Sjoegren-Syndrom
Website: www.sjoegren-syndrom.at
Sjögren's Society of Canada (SjSC)
304-31 Mechanic Street, Paris, Ontario, N3L 1K1, Canada
Email Address: info [at] sjogrenscanada [dot] org (info[at]sjogrenscanada[dot]org)
Website: www.sjogrenscanada.org
Association du Syndrome de Sjögren Inc
3155 Rue Hochelaga, Suite 001
Montreal, Quebec, Canada H1W 1G4
Email Contact: sjogren [dot] montreal [at] qc [dot] aira [dot] com (sjogren[dot]montreal[at]qc[dot]aira[dot]com)
Website: www.sjogrens.ca
Association of Sjögren’s Patients of China (ASPC)
11 Xizhimen South St. Beijing 100044 China
Phone: +86 18611707347 Fax: +86 1099324178
Email Contact: sjogren [dot] cn [at] hotmail [dot] com (sjogren[dot]cn[at]hotmail[dot]com)
Website: http://www.pusrc.org
Zivot sa Sjogren Sindromom
Veslacka 6, 10000 Zagreb
Phone: 0997954851
Email Contact: info [at] zivotsasjogrensindromom [dot] hr (info[at]zivotsasjogrensindromom[dot]hr)
Website: www.zivotsasjogrensindromom.hr
Sjögren Europe
Rue du Marché-Neuf 27
2503 Bienne
Switzerland
Email Contact: contact [at] sjogreneurope [dot] org (contact[at]sjogreneurope[dot]org)
Website: https://sjogreneurope.org/
Suomen Sjögrenliitto ry
Läntinen Pitkäkatu 33
20100 Turku, Finland
Email Contact: toimisto [at] sjogrenliitto [dot] fi (toimisto[at]sjogrenliitto[dot]fi)
Website: https://www.sjogrenliitto.fi/
Association Francaise du Gougerot-Sjögren et des Syndromes Secs (AFGS)
9 rue du Chateau
67540 Ostwald, France
Email Contact: contact [at] afgs-syndromes-secs [dot] org (contact[at]afgs-syndromes-secs[dot]org)
Website: www.afgs-syndromes-secs.org
Facebook: fr-fr.facebook.com/afgsofficiel/
Description: 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 2700 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 400 000 Euros".
Selbsthilfe-Netzwerk Sjögren-Syndrom
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. It provided an exchange of experiences. In 2000, the homepage www.sjoegren-erkrankung.de – with available information - was arranged.
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,
> organizing the German Sjögren-Syndrom Day/Meeting,
> creating national and international Sjögren-Syndrom contacts,
> arranging medical consultation with a medical doctor,
> updating the homepage www.sjoegren-erkrankung.de.
Material:
Textbook: “Sjögren-Syndrom”; a textbook for patients, medicines and co-therapists; 2nd edition 2009, (Verlag hier einfügen!)
Beschreibung:Die Selbsthilfe Sjögren-Syndrom ist eine private und unabhängige Initiative. Ein erstes Treffen zum Erfahrungsaustausch von Sjögren-Betroffenen aus ganz Deutschland fand 1999. Im Jahr 2000, 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
Laufende Aktualisierung der Homepage: www.sjoegren-erkrankung.de
Sjögren’s India (SI)
701, Vatsaraj,
Opposite Shraddha School
Jodhpur Gam Road, Ahmedabad – 380015, Gujarat, India
Email Contact: sspatientgroup [dot] india [at] gmail [dot] com (sspatientgroup[dot]india[at]gmail[dot]com)
Website: www.sjogrensindia.org
Description: 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.
Materials:
Sjögren’s India Brochure in Hindi (PDF - 265 KB)
Sjögren’s India Brochure in Marathi (PDF - 265 KB)
Sjögren’s India Brochure in Gujarati (PDF - 594 KB)
Yayasan Sjogren's Syndrome Indonesia (YaSSI)
Keroncong Permai ABP No. 1
RT 004 RW 003, Jatiuwung, Tangerang, Indonesia
Email Contact: ssi [at] yayasan-ssi [dot] org (ssi[at]yayasan-ssi[dot]org)
Website: www.yayasan-ssi.org
Instagram: @sjogrens_indonesia
Group: Yayasan Sjogren's Syndrome Indonesia Telegram
Channel: t.me/YaSSIChannel
Sjögren's Ireland
Patient Advocacy Group
Email Contact: sjogrensireland [at] gmail [dot] com (sjogrensireland[at]gmail[dot]com)
Website: https://sjogrensresearch-ireland.eu/
Facebook: www.facebook.com/SjogrensIrl
Instagram: instagram.com/sjogrensirl/
Twitter: Twitter.com/sjogrensirl
Associazione Nazionale Italiana Malati Sindrome di Sjögren - A.N.I.Ma.S.S.
Via S. Chiara, 6
37129 Verona - ITALIA
Email Contact: animass [dot] sjogren [at] fastwebnet [dot] it (animass[dot]sjogren[at]fastwebnet[dot]it)
Website: www.animass.org/sjogren
Japanese Sjögren’s Association for Patients (JSAP)
Nihon University School of Medicine
30-1 Oyaguchikamimachi
Itabashiku Tokyo 173-8610, Japan
Phone: +81 (0)3 3972 8111 Ext 2402 Fax: +81 (0)3 3972 2893
Email Contact: sjogren [dot] 7185 [at] gmail [dot] com (sjogren[dot]7185[at]gmail[dot]com)
Website: www.maeda-shoten.com/sjogren
Association Marocaine des Maladies Auto-immunes et
Systémiques (AMMAIS)
421, Boulevard Abdelmoumen, Résidence Riad
Abdelmoumen, Bureau n°10 Casablanca, Morocco
Phone: +212 522 862 363
Website: www.ammais.ma
Nationale Vereniging Sjögrenpatienten (NVSP)
P.O. BOX 6
3600 AA Maarssen, The Netherlands
Email Contact: info [at] nvsp [dot] nl (info[at]nvsp[dot]nl)
Website: www.nvsp.nl
Facebook: www.facebook.com/www.nvsp.nl
Mahlerlaan 4, 1411 HW Naarden, The Netherlands
Email Contact: info [at] painful-bladder [dot] org (info[at]painful-bladder[dot]org)
Website: www.painful-bladder.org
Sjögren’s Syndrome Association of New Zealand
PO Box 314105,
Orewa, Auckland 0946
Phone: +64 (0)9 478 7041
Website: www.sjogrensnewzealand.co.nz
Diagnosegruppe Sjøgrens Syndrom
Professor Dahls gate 32, 0260 Oslo, Norway
Email Contact: sjogrens [at] revmatiker [dot] org (sjogrens[at]revmatiker[dot]org)
Website: www.revmatiker.no/diagnoser/diagnosegrupper/sjogrens-syndrom
Description:
The diagnostic group for Sjøgren's syndrome welcomes you to our website!
Sjøgren's work in Norway started in 1998.
We are organized under the Norwegian Rheumatism Association as a resource group.
We work on issues that concern members with Sjøgren's syndrome.
We are working to get more eye drops free, better treatment options, broadened the offer of free dental care, support research on the diagnosis and obtain and present information to patients and healthcare professionals.
Association of People with Rheumatism and their
Friends (Stowarzyszenie Reumatykow i ich Sympatykow)
Spartanska 1, 02-637 Warsaw, Poland
Email Contact: reuma [at] idn [dot] org [dot] pl (reuma[at]idn[dot]org[dot]pl)
Website: http://reuma.idn.org.pl
Facebook: www.facebook.com/reuma.sriis
Twitter: https://twitter.com/Reuma_org
Núcleo de Apoio ao Doente com Síndrome de Sjögren
da Liga Portuguesa contra as Doenças Reumáticas (LPCDR)
Av. Ceuta-Norte Lt-13 Loja-2
1350-410 Lisboa, Portugal
Website: http://lpcdr.org.pt/nucleos/nucleo-sindrome-de-sjoegren
Email Contact: lpcdr [at] lpcdr [dot] org [dot] pt (lpcdr[at]lpcdr[dot]org[dot]pt)
Description:
Sjögren Patients' Group (Núcleo de Sjögren) is one of the core groups at the Portuguese League Against Rheumatic Diseases (LPCDR) and it is the only patients' association devoted to Sjögren's Syndrome in Portugal.
With LPCDR's total support, since 2012 this specific patients' group has been promoting awareness on Sjögren's Syndrome amongst decision makers, the general public, rheumatologists and GP's.
Our aims are to provide information and support to patients and carers, to raise awareness amongst health care providers and health professionals, including doctors, and to promote a better understanding of Sjögren's Syndrome.
Being the only Portuguese patients' group, we also provide support and information to other Portuguese speakers through our closed group on Facebook or internet page at LPCDR's website.
Sindrom Sjogren Romania (SSRo)
Str. G-ral Macarovici George 7, Bucharest 6, cod 060142, Romania
Email Contact: info [at] sjogren [dot] ro (info[at]sjogren[dot]ro) / sjogrenromania [at] gmail [dot] com (sjogrenromania[at]gmail[dot]com)
Website: www.sjogren.ro
National Public Organization of disable people
"Russian Rheumatic Association "Nadegda"
Russia, Moscow, Kashirskoe shosse, h.34 a
Website http://revmo-nadegda.ru/
Korea Sjögren’s Syndrome Support Group (KSSG)
2240-1403, Le Parvis Apt, 115, Dongtansunhwan-daero 20-gil, Hwaseong-si, Gyeounggi-do, KOREA
Phone: +82-10-4491-7275
Email Contact: sjogren [at] naver [dot] com (sjogren[at]naver[dot]com)
Website: www.sjogren.or.kr
Description: The only organization in Korea that deals with Sjögren's. Currently, more than 100 members are enrolled, and professors in the filed of Rheumatology, ophthalmology, dentistry, and dermatology are helping us as advisors. We publish 4 bulletins a year and have meetings about 2 to 3 times a year. The current chairman of the organization started to gather those with Sjögren's disease, as his wife had the disease. The official website of the organization is http://www.sjogren.or.kr and the chairman is updating his private website http://www.sjogrens.or.kr with a journal of his wife and his child.
Asociación Española de Síndrome de Sjögren (AESS)
C/ Cea Bermúdez 14A, Piso 6 Of. 2
28003 Madrid, Spain
Email Contact: contacto [at] aesjogren [dot] org (contacto[at]aesjogren[dot]org)
Website: www.aesjogren.org
Facebook: https://www.facebook.com/aesjogren/
Twitter: https://twitter.com@aesjogren
Stiftelsen Sjögrens Syndrom
Box 147, S-233 23 Svedala, Sweden
Email Contact: info [at] sjogrensjournal [dot] se (info[at]sjogrensjournal[dot]se)
Website: www.sjogrensyndrom.se
Association Romande du Syndrome de Sjögren (ARSYS)
1800 Vevey, CH
Email Contact: info [at] sjogren [dot] ch (info[at]sjogren[dot]ch)
Website: www.sjogren.ch
Description: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)
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. 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.
Das Sjoegren-Forum wurde am 17. November 2005 gegründet.
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 9DP
Email Contact: office [at] bssa [dot] uk [dot] net (office[at]bssa[dot]uk[dot]net)
Website: www.bssa.uk.net
Sjögren’s Syndrome Foundation (SSF)
10701 Parkridge Blvd., Suite 170
Reston, VA 20191
Phone: +1 301 530 4420 Fax: +1 301 530 4415
Email Contact: info [at] sjogrens [dot] org (info[at]sjogrens[dot]org)
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 $3 Million annually, funds over $450,000 in research initiatives each year, and maintains over 65 support groups throughout the United States. The Foundation staff and volunteers are committed to increasing awareness of this common disease.
Materials:
What is Sjögren’s? (474 KB)
Dry Eye: A hallmark symptom of Sjögren’s (224 KB)