INTERNATIONAL SJÖGREN’S
NETWORK

www.internationalsjogrensnetwork.org

Edited by the AFGS (France)
Updated January 2010

International Sjögren’s network

TABLE OF CONTENTS
Warning: This yearbook is provisional. Please check that all your data are correct. The phone
numbers have been standardized and the international dialling code added. Should you find any
mistake, please contact the AFGS.
From pages 3 to 19 Associations only dedicated to Sjögren’s Syndrome
From pages 22 to 27 Associations of people with diseases associated with Sjögren’s Syndrome
AUSTRIA................................................................................................................................................ 3
AUSTRALIA .......................................................................................................................................... 4
CANADA................................................................................................................................................. 5
CANADA QUEBEC............................................................................................................................... 6
FINLAND................................................................................................................................................ 7
FRANCE ................................................................................................................................................. 8
GERMANY............................................................................................................................................. 9
INDIA .................................................................................................................................................... 10
ISRAEL ................................................................................................................................................. 11
ITALY ................................................................................................................................................... 12
JAPAN................................................................................................................................................... 13
KOREA ................................................................................................................................................. 14
NEW ZEALAND.................................................................................................................................. 15
SPAIN.................................................................................................................................................... 16
SWEDEN............................................................................................................................................... 17
SWITZERLAND.................................................................................................................................. 18
THE NETHERLANDS ........................................................................................................................ 19
UNITED KINGDOM........................................................................................................................... 20
USA........................................................................................................................................................ 21
FRANCE SCLERODERMA............................................................................................................... 22
INTERNATIONAL PAINFUL BLADDER ...................................................................................... 23
POLAND RHEUMATIC DISEASES ................................................................................................ 24
PORTUGAL LUPUS ........................................................................................................................... 25
RUSSIA RHEUMATIC DISEASES................................................................................................... 26
TURKEY RHEUMATIC DISEASES ................................................................................................ 27

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International Sjögren’s network

AUSTRIA

Name and acronym

Selbsthilfe-Gruppe « La Vera » Sjoegren-Syndrom

First established in

2006

Address

Vera Pekarek c/o La Vera Image Partyservice undCatering GmbH A-1130 Wien Orangerie Schönbrunn
Schönbrunner Schloßstraße 47

e-mail address

vera.pekarek@imagevienna.com

Phone+43 664 325 5797

Fax

+43 181 250 4188

Web sitewww.sjoegren-syndrom.at

Communication languages

German and a little bit English

Chairman namePrivateNumber of members
Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Only Sjögren’s Syndrome

Supports research?

No

Newsletter (name, periodicity, paper and/or
electronic version)No

Last updated

Summer 2009

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International Sjögren’s network

AUSTRALIA

Name and acronym

The Australian Sjögren’s Syndrome Association
Inc. (TASSA)First established in

2001

Address

39 Main Arm Rd, Mullumbimby 2482

e-mail address

bevnorton@sjogrens.org.au

Phone+61 (0) 26 684 3704

Fax

N/A

Web sitewww.sjogrens.org.au

Communication languages

EnglishChairman name

Mrs. Beverly NORTON

Number of members

150

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s and all associated diseases

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Australian moisture seekers

Last updated

Summer 2009

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International Sjögren’s network

CANADA

Name and acronym

Sjögren’s Society of Canada, SjSCFirst established in

2006

Address

32 Oneida Drive, Brantford, Ontario, Canada
N3S 0A8

e-mail address

info@sjogrenscanada.org or leedurdon@rogers.com

Phone+1 416 943 8150

Fax

+1 519 752 3830

Web sitewww.sjogrenscanada.org

Communication languages

EnglishChairman name

Mrs.Lee DURDON, President & FounderNumber of members

1200 and growing

Only Sjögren’s association in the country

Only national. There is a separate organization in
Quebec.

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Dedicated Exclusively to Sjögren’sSupports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)“Connections”, magazine style – paper, publishedquarterly

Last updated

Summer 2009

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International Sjögren’s network

CANADA QUEBEC

Name and acronym

Association du Syndrome de Sjögren Inc

First established in

Sept. 1994

Address

3155 Rue Hochelaga, Suite 001,
Montréal, Quebec, Canada H1W 1G4e-mail address

sjogren.montreal@qc.aira.com

Phone+1 514 934 3666

Fax

+1 514 934 1241

Web sitewww.sjogrens.ca

Communication languages

French and English

Chairman name

Mrs. Ginette TEXIER

Number of members

210

Only Sjögren’s association in the country

No

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Exclusively to Sjögren’sSupports research?

Yes

Newsletter (name, periodicity, paper
and/or electronic version)

Sjögren’s bulletin, quarterly, paper version
only

Last updated

Spring 2009

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International Sjögren’s network

FINLAND

Name and acronym

Sjögrenin syndrooma -yhdistys ry

First established in

1996

Address

Kauppakatu 1 A, 60100 Seinäjoki, Finlande-mail address

ssyhdist@kolumbus.fi

Phone+358 6 4232014

Fax
Web sitewww.kolumbus.fi/sjogrenin.syndrooma

Communication languages

Finnish, Swedish

Chairman name

Mrs. Marja-Liisa PELTONEN

Number of members

2490

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

exclusively SS

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Kuivakukat, quarterly 28-page magazine, paper.
Partly electronic
Leaflets in Finnish, Swedish, Estonian, English, yearly
updatedLast updated

Spring 2009.
.

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International Sjögren’s network

FRANCE

Name and acronym

Association Française du Gougerot-Sjögren et desSyndromes Secs AFGSFirst established in

1990

Address

Les Peyrières, 81660 Pont de l’Arn. France

e-mail address

afgs@wanadoo.fr

Phone+33 (0) 56 361 0470

Fax

+33 (0) 56 361 0470

Web sitewww.afgs-sydromes-secs.org

Communication languages

FrenchChairman nameMrs Catherine FAOU

Number of members

2350

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s exclusive

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)“Ressources”, Quarterly, paper

Last updated

Spring 2009

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International Sjögren’s network

GERMANY

Name and acronym

Selbsthilfe-Netzwerk Sjögren-Syndrom

First established in

May 1999

Address

Elfriede Borchers, Schäferbergweg 11, D-71069
Sindelfingene-mail address

ebo@borchers.org

Phone+49(0)7031-386202

Fax+49(0)7031-382595

Websitewww.sjoegren-erkrankung.de

Communication languages

German and English

Chairman name
Number of members
Only Sjogren’s association in the country
Only Sjögren-Syndrom

Dedicated exclusively to Sjogren’s or also
dedicated to other rheumatic diseases
Supports research?
Newsletter (name, periodicity, paper and/or
electronic version)No

Last updated

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INDIA

Name and acronym

Sjögren’s India (SI)First established in

2006

Address

701, Vatsaraj, Opposite Shraddha School, Jodhpur
Gam Road, Ahmedabad – 380015
GujaratIndia

e-mail address

kirtidaoza@gmail.com kirtidaoza@hotmail.com
purvid@gmail.com

Phone
Fax

+91 792 692 2254 and +91 942 913 3344
none

Web sitewww.sjogrensindia.org

Communication languages

English, Hindi, Gujarati

Chairman name

Mrs. Kirtida OZA

Number of members

Registered members : 20 patients (Gujarat State) + 1
family member each
Unregistered patients above 50 acrossIndia

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Yes
But have been extending counselling support topatients suffering from RA, Lupus, Scleroderma

Supports research?

Not yet but would like to would also like to take up
advocacy issues

Newsletter (name, periodicity, paper and/or
electronic version)
Last updated

Not yet… working on development of multi lingual
websiteSummer 2009

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International Sjögren’s network

ISRAEL

Name and acronym

Israeli Association of Sjögren’s Syndrome

First established in

1990

Address

Mevo Timna 6B, Jerusalem 97753, Israele-mail address

be.porath@gmail.com:

Phone+972 2-5813011

Fax+972 2-5817724

Web site---Communication languages

English and Hebrew

Chairman nameDr. (Mrs.) Natanli STERMAN

Number of members

100 paid membership ; 50 complimentary ; and 200
invitees for our yearly conference

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Exclusively to Sjögren’s but include relatively related
articles in the journal we publish 3 times a year

Supports research?

We are saving for thisNewsletter (name, periodicity, paper and/or
electronic version)“Yedion” ; 3 times a year ; 35-40 pages each in
English and Hebrew on A-4 paper

Last updated

Summer 2009

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International Sjögren’s network

ITALY

Name and acronym

Associazione Nazionale Italiana Malati Sindrome
di Sjögren - A.N.I.Ma.S.S.

First established in

18/04/2005

Address

Via S.Chiara, 637129 Verona - ITALIA

e-mail address

Animass.sjogren@fastwebnet.it

Phone+39 333 838 6993 - +39 045 958 0027

Fax

+39 045 958 0027

Web site

http://www.animass.org/sjogren

Communication languages

ItalianChairman nameDr. (Mrs) Lucia MAROTTA

Number of members

1.000

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s syndrome exclusive

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Last updated

Summer 2009

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JAPAN

Name and acronym

Japanese Sjögren’s Association for Patients,
JSAP

First established in

1986

Address

Nihon University Scholl of Medicine30-1 Oyaguchitanimachi
Itabashiku Tokyo
173-8610 Japane-mail address

sjogren@med.nihon-u.ac.jp

Phone+81 (0)3 3972 8111 Ext 2402 (Dr Masami Takei)

Fax+81 (0)3 3972 2893

Web site

http://www.maeda-shoten.com/sjogren/

Communication languages

Japanese

Chairman name

Mrs. Chizuko NAKADA (Yoko TOKUNO, secretary)

Number of members

400

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s syndrome exclusive

Supports research?

No

Newsletter (name, periodicity, paper and/or
electronic version)

Year report, 1/Y
Communication letter, 2/Y

Last updated

Winter 2009

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International Sjögren’s network

KOREA

Name and acronym

Korea Sjogren’s syndrome Support Group(KSSG)First established in

2002.05.25

Address

Korea, Gyeonggi-do, Hwaseong-si, Anneaung-dong 210,
Chung Kwang APT 102-904

e-mail address

sjogren@dreamwiz.com

Phone
Fax
Web site

http://www.sjogren.or.kr

Communication languages

koreanChairman name

Choi Kyung-seok

Number of members

150 persons

Only Sjogren’s association in the country

Yes

Dedicated exclusively to Sjogren’s or also
dedicated to other rheumatic diseases

Only sjogren’sSupports research?

NO

Newsletter (name, periodicity, paper and/or
electronic version)

YES

Last updated

Winter 2009

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International Sjögren’s network

NEW ZEALAND

Name and acronym

Sjogrens Syndrome Association of New ZealandFirst established in(approx) 1994 as support group
Incorporated Society Established 2007

Address

Bldg 1, Unit C, 3 Ceres Court, Albany, Auckland
North Shore 0632

e-mail address

sarah@sjogrensnewzealand.co.nz

Phone
Fax

+64 (0)9 478 1578

Web sitewww.sjogrensnewzealand.co.nz

Communication languages

EnglishChairman nameDavid ZIMMERMAN

Number of members

approx 800

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Yes

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Last updated

New Zealand Sjögren’s Syndrome Association
Newsletter. About monthly-mostly posted paper
version, some sent electronically

Summer 2009

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International Sjögren’s network

SPAIN

Name and acronym

Asociación Española de Síndrome de Sjögren(AESS)First established in

1995

Address

C/ Cea Bermúdez, 14A Piso 6 Of. 2. 28003 MadridSpaine-mail address

info@aesjogren.org

Phone+34 91 535 8653

Fax

+34 91 535 8654

Web sitewww.aesjogren.org

Communication languages

SpanishChairman nameJenny Inga DIAZ

Number of members

420

Only Sjögren’s association in the country

No

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s exclusive

Supports research?

No

Newsletter (name, periodicity, paper and/or
electronic version)“Gota a Gota” magazine. Yearly

Last updated

Summer 2009

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International Sjögren’s network

SWEDEN

Name and acronym

Riksföreningen Sjögrens Syndrom

First established in

1985

Address

Box 147, S-233 23 Svedala, Sweden

e-mail address

harry.paulnitz@telia.com

Phone+46 4625 5925

Fax

+46 4040 1535

Web sitewww.sjogrensyndrom.se

Communication languages

Swedish and english

Chairman name

Harry FH PAULNITZ

Number of members

1.400 paying members and 3.200 gets our newsletter

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

We are only dedicated to Sjögren´s.

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Medlemstidningen Sjögrens syndrome. Earlier called
Torkarbladet.

Last updated

Summer 2009

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International Sjögren’s network

SWITZERLAND

Name and acronym

Association Romande du Syndrome de Sjögren,
ARSYS

First established in

2007

Address

Rue du Simplon 30, 1800 Vevey, CHe-mail address

info@sjogren.chPhone+41 21 921 2931

Fax-

Web sitewww.sjogren.ch

Communication languages

French (German and English spoken)

Chairman name

Mrs. Alice GROSJEAN

Number of members

15

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Only Sjögren’sSupports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Bulletin, twice a year, paper

Last updated

Summer 2009

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International Sjögren’s network

THE NETHERLANDS

Name and acronym

Nationale Vereniging SjögrenpatiëntenNVSPFirst established in

10 december 1986

Address

Visitors address ; Stationsweg 16, 3981 AC Bunnik
Post address ; Postbus 4, 3980 CA Bunnik

e-mail address

info@nvsp.nl

Phone+ 31 (0)30 294 1383

Fax

+31 (0)30 294 8503

Web sitewww.nvsp.nl

Communication languages

Dutch

Chairman name

Mrs. Nanda LUBERTSEN

Number of members

2231

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Sjögren’s Syndrome exclusively

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)‘n Ogenblikje, quarterly, paper

Last updated

Summer 2009

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International Sjögren’s network

UNITED KINGDOMName and acronym

British Sjögren’s Syndrome Association BSSA

First established in

1986

Address

Po Box 15040, Birmingham B31 3DP

e-mail address

office@bssa.uk.net

Phone+ 44 (0) 121 455 6532

Fax
Web sitewww.bssa.uk.net

Communication languages

EnglishChairman name

Mrs. Linda J Stone

Number of members

2300

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Just Sjögren’s Syndrome

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Quarterly newsletter - paper

Last updated

Summer 2009

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USA

Name and acronym

Sjögren’s Syndrome Foundation (SSF)

First established in

1983

Address

6707 Democracy Blvd, Ste 325

e-mail address

ssf@sjogrens.org

Phone+1 301 530 4420

Fax

+1 301 530 4415

Web sitewww.sjogrens.org

Communication languages

EnglandChairman name

Mr. Steven TAYLOR (CEO)

Number of members

10,000+ ; Mail to 12,000

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Yes

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

The Moisture Seekers; paper; for patient readers
Sjögren’s Quarterly; paper and electronic forinternational audience; targets professional readers,
but patients may subscribe as well

Last updated

Spring 2009

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International Sjögren’s network

FRANCE SCLERODERMA

Name and acronym

Association des Sclérodermiques de France
A.S.F.

First established in

1989

Address

41 rue du Pont de Fer – 28260 Sorel-Moussel France

e-mail address

association.asf@club-internet.fr

Phone+ 33 (0) 82 062 0615

Fax
Web sitewww.association-sclerodermie.fr

Communication languages

FrenchChairman name

Mrs. Dominique GODARD

Number of members

1000

Only Sjögren’s association in the country
Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Scleroderma

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Quarterly paper and a newsletter in a few months time

Last updated

Summer 2009

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INTERNATIONAL PAINFUL BLADDER(BASED IN THE NETHERLANDS)PATIENT ORGANIZATION FOR AN ASSOCIATED DISORDER

Name and acronym

International Painful Bladder Foundation
IPBFFirst established in

2005

Address

B.L.F. De Montignylaan 73, 3055 NA Rotterdam, The
Netherlands

e-mail address

info@painful-bladder.org

Phone
Fax

+31 (0)10 461 3330
Same

Web sitewww.painful-bladder.org

Communication languages

English + information leaflets in many other
Languages

Chairman name

Mrs. Jane MEIJLINK

Number of members

5 board members worldwide. Subscription to thenewsletter is free (around 5000 subscribers).

Only Sjögren’s association in the country-

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

This foundation is dedicated to interstitial cystitis andassociated disorders, including SS. We have a bookon Sjögren’s Syndrome by Dr Joop P van de Merweon our website:
http://www.painful-bladder.org/pbs_ic_ass_dis.html

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Quarterly IPBF e-newsletter

Last updated

Summer 2009

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POLAND RHEUMATIC DISEASESName and acronym

Association of People with Rheumatism and their
Friends (Stowarzyszenie Reumatykow i ich
Sympatykow)

First established in

1993

Address

Spartanska 1, 02-637 Warsaw, Polande-mail address

reuma@idn.org.pl

Phone
Fax

+48 664 630 125

Web site

http://reuma.idn.org.pl

Communication languages

Polish, English, Russian

Chairman name

Mrs. Jolanta GRYGIELSKA

Number of members

300

Only Sjögren’s association in the country

No association only for people with Sjoegren syndrome

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

For people with every rheumatic disease

Supports research?

No

Newsletter (name, periodicity, paper and/or
electronic version)“Golden Remedy” (Zloty Srodek) twice a year, paper andelectronic version

Last updated

Summer 2009

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PORTUGAL LUPUS

Name and acronym

Associação de Doentes com Lứpus (PortugueseLứpus Patients’Association) - ADL

First established in

January 1992

AddressPraça João do Rio 9 r/ dto 1000/ 180 Lisboa
Portugale-mail address

associacao.lupus@clix.pt

Phone+351 21 844 6473

Fax

+351 21 314 6216

Web site

Being renewed

Communication languages

English, Portuguese, French

Chairman nameRosa Maria GONCALVES

Number of members

3000

Only Sjögren’s association in the country
Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Dedicated to Lứpus disease

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Being remodelled

Last updated

Summer 2009

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RUSSIA RHEUMATIC DISEASESName and acronym

Interregional Non-Government Organizationof Invalids Rheumatologic
Association "Nadezhda"
RRA “Nadegda”

First established in

2006, Russia

Address

Russia, Moscow, Kashirskoe shosse, h.34 ae-mail address

Buna17@mail.ru

Phone+8 (495) 338-46-25

Fax+8 (495) 338-46-25

Web site

http://revmo-nadegda.ru/

Communication languages

RussianChairman name

Mrs. Nataliya BULGAKOVA

Number of members

10 000

Only Sjögren’s association in the country

Yes, only Sjögren’s association

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

All rheumatic diseases

Supports research?

Yes

Newsletter (name, periodicity, paper and/or
electronic version)

Newsletter - electronic version

Last updated

Winter 2010

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TURKEY RHEUMATIC DISEASESName and acronym

Society of Information and Support for Patients with
Rheumatic Diseases

First established in

27 April 2006

Address

Ankara Turkey

e-mail address

info@romaturka.org

Phone
Fax

+90 312 425 7558
+90 312 419 8409

Web sitewww.romaturka.org

Communication languages

TurkishChairman nameBaşak TARHAN, Başak SONMEZ

Number of members

21 permanent members

Only Sjögren’s association in the country

Yes

Dedicated exclusively to Sjögren’s or also
dedicated to other rheumatic diseases

Also dedicated to other rheumatic diseases

Supports research?

-

Newsletter (name, periodicity, paper and/or
electronic version)-

Last updated

Summer 2009

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