directory - EULAR

Eular directory of 

ParE organisations 2013 

Lithuania 

Sweden 

Portugal 

reece 

Slovakia 

Ireland 

Slovenia 

Austria 

ungary Poland 

Spain 

ermany 

Russia 

Bulgaria 

roatia Turkey 

omania 

Denmark 

Italy 

Norway 

Belgium 

France 

Cyp 

Montene 

Gre 

Ice 

Switzerlan 

United Kingdom Malta 

Norway Sweden Serbia 

Former 

Yugosla 

atviaCzech 

Republic Israel 

Republi 

of Mace 

CONTENTS

CONTENTS 

Introduction 3 

rlands 

Countries: 

Austria 4 

Belgium (Fr) 5 

ugal 

Belgium (Fl) 6 

Bulgaria 7 

slav Republic 

Croatia 8 

Cyprus 9 

Czech Republic 10 

Denmark 11 

Estonia 12 

Finland 13 

France 14 

Former Yugoslav Republic 

Eular directory 

of ParE 

organisations 

2013 

of Macedonia 15 

Germany 16 

Greece 17 

Hungary 18 

Iceland 19 

Ireland 20 

Israel 21 

Italy 22 

Latvia 23 

Lithuania 24 

Malta 25 

Montenegro 26 

Norway 27 

Poland 28 

Portugal 29 

Romania 30 

Russia 31 

Serbia 32 

Slovakia 33 

Slovenia 34 

Spain 35 

Sweden 36 

Switzerland 37 

Turkey 38 

United Kingdom 39 

Co-opted: ASIF 40 

Co-opted: FESCA 41 

Related organisation: Lupus Europe 42

CONTENTS 

One of the priorities of EULAR is to strengthen the network of member organisations. This directory is a 

rlands 

(Belgium), Sandra Canadelo (Portugal), Alison Kent (United Kingdom) and Jacqueline Mäder (Switzerland), 

ugal 

slav Republic 


of ParE 

organisations 

2013 

About “EULAR directory of PARE organisations” 

tool to increase the level of knowledge of PARE (People with Arthritis/Rheumatism in Europe) organisations 

about each other. 

The data provided by the directory serves as a tool for EULAR and its organisations with common aims 

and objectives to be able to help and learn from each other. 

EULAR would like to thank Maria Batziou (Greece), Diana Skingle (United Kingdom), Nele Caeyers 

for their support and commitment to develop this directory and we are sure that this publication helps to 

make a difference and overcome national boundaries and facilitates mutual learning. 

About EULAR 

The European League Against Rheumatism (EULAR) is the organisation which represents the patient, 

health professional and scientific societies of rheumatology of all the European nations. EULAR endeavours 

to stimulate, promote, and support the research, prevention, treatment and rehabilitation of rheumatic and 

musculoskeletal diseases. Within EULAR, national PARE organisations work together and develop activities 

through the Standing Committee of PARE. For more information please visit www.eular.org 

EULAR Secretariat 

Seestrasse 240, 8802 Kilchberg, Switzerland 

Tel.: +41 44 716 3030 Fax: +41 44 716 3039 

Email: eular@eular.org 

www.eular.org 

Impressum: 

EULAR directory of PARE organisations 2013 

EULAR Vice President, representing PARE Neil Betteridge 

PARE Standing Committee Chairperson Maria Batziou 

EULAR Secretariat Florian Klett, Birte Glüsing 

Editor Florian Klett 

Graphic Design and Print Production fc-d Ltd, London 

Publisher EULAR Standing Committee of People with Arthritis/Rheumatism in Europe 

3

4 


of ParE 

organisations 

2013 

Österreichische Rheumaliga 

Austrian League 

Against Rheumatism 

address of the organisation 

Street: Dorfstrasse 4, Maria alm 

City/Town: Salzburg 

ZIP/Postal Code: aT – 5761 

Country: austria 

Tel: 0043 699 155 416 79 

Email: info@rheumaliga.at 

Website: www.rheumaliga.at 

Name and title of President, Treasurer 

and General Manager/Secretary 

President: Gertraud Schaffer 

Treasurer: Roswitha Ben Hassen 

General Manager/ 

Secretary: Veronika Eder 

liaison person with Eular 

Name: Nicola Lins 

Email: nicil@aon.at 

Tel: 0043 699 171 889 89 

Youth activities 

There is an independent youth organisation comprising 

up to ten members for parents of kids with RMDs 

Name: Karin Formanek 

Email: shg_rheumalis@yahoo.com 

Tel: 0043 699 197 488 11 

Website: http://www.rheumalis.org 

about the organisation 

CONTENTS 

Österreichische rheumaliga was 

founded in 1995. 

The aims of the organisation are: 

• Raise awareness about rheumatic and 

musculoskeletal diseases (RMDs) 

• Patient information and support services 

• Improve the quality of life for people with RMDs 

• Promote contacts with fellow patients 

All types of RMDs are represented. The organisation 

has 8 branches and 15 local groups, covering 

some areas of the country and it is run by 

volunteers with RMDs. 

One of the largest recent campaigns was celebrating 

World Arthritis Day in the federal states of the country. 

The most important topics for the organisation in 

the coming years are: 

• Raising awareness about RMDs 

• Promoting the profile and activities of 

the organisation 

• Organising fundraising activities 

• Motivating new volunteers


of ParE 

organisations 

2013 

CLAIR - Confédération de Lutte contre les 

Affections Inflammatoires Rhumatismales 

Belgian League Against Rheumatism 

(Wallonia) 


Street: rue Chauny 10 

City/Town: Templeuve 

ZIP/Postal Code: BE – 7520 

Country: Belgium 

Tel: 0032 494 151 6 

Email: info@clair.be 

Website: www.clair.be 



President: Bernadette Vanleeuw 

Treasurer: Paul Hankart 


Secretary: Guy Dagnies 


Name: Bernadette Vanleeuw / Guy Dagnies 

Email: info@clair.be 

Tel: 0032 494 151 6 / 

0032 494 366 108 


CONTENTS 

ClaIr was founded in 2004. 




• Campaign for equal rights and treatment 



The types of RMDs that are represented by the 

organisation are the following: Rheumatoid arthritis, 

ankylosing spondylitis, psoriatic arthritis, juvenile 

arthritis, lupus (SLE) and scleroderma. 

The organisation has regional and local branches 

which cover the French speaking part of the country 

and they are run by volunteers with RMDs. The total 

number of members is about 2500 individuals. 

One of the largest recent campaigns was 

The national journey for arthritis. 




• Motivating new volunteers 

No youth activities at present. 

5

ReumaNet vzw. 

Belgian League 


(Flanders) 

6 


Street: Bresserdijk 75 

City/Town: Mol 

ZIP/Postal Code: BE – 2400 


Tel: 0032 143 223 99 

Email: info@reumanet.be 

Website: www.reumanet.be 


of ParE 

organisations 

2013 



President: Nele Caeyers 

Treasurer: Ilse De Keyser 


Secretary: Nele Caeyers 


Name: Nele Caeyers 

Email: Info@ReumaNet.be 

Tel: 0032 143 223 99 


Mostly online contact. In 2013 there will be a project 

around childhood arthritis and having a baby while having 

arthritis. Communication: no website YET (working on it), 

but they have a Facebook page (closed). 10-50 members 

Name: Jahel Roels 

Email: Jahel.roels@hotmail.com 


CONTENTS 

reumaNet organisation was founded 

in 2006. 







The types of RMDs which are represented by the 



arthritis, fibromyalgia, lupus (SLE), scleroderma, 

vasculitis, Sjogren’s, myositis and MCTD. The 

organisation has regional and local branches covering 

the Flemish part of the country and they are run by 

volunteers with RMDs. In total the organisation is 

comprised of 6 member organisations and about 

5000 individual members. 

2012 was a year in which ReumaNet really grew. The 

organisation hired two part time employees in August 

2011, and with their help, ReumaNet has seriously 

professionalized its organisation. World Arthritis Day on 

October 12th was the highlight of 2012 with a seminar 

with all stakeholders and different key note speakers. 



• Work and re-integration in the workforce 

• Physical activity and sports 


• Youth and children


of ParE 

organisations 

2013 

BOPRD 

Bulgarian Organisation for 

Patients with Rheumatic Diseases 


Street: Dianabad 9-5-20 

City/Town: Sofia 

ZIP/Postal Code: BG – 1172 

Country: republic of Bulgaria 

Tel: 0035 989 840 143 9 

Email: revmatologia.org@gmail.com 

Website: www.revmatologia.org 



President: Tzveta Apostolova 

Treasurer: Latinka Stancheva 


Secretary: Boryana Boteva 


Name: Boryana Boteva 

Email: revmatologia.org@gmail.com 

Tel: 0035 989 840 143 9 


CONTENTS 

BOPrD was founded in 2010. 


• Raising awareness about rheumatic and 


• Campaigns for equal rights and treatment 

• Improve the quality of life of people with RMD’s 

• Access to healthcare and newest medicines 

All types of RMD’s are represented by the 

organisation. The organisation has local branches 

in every municipality of the country and they are run 

by volunteers with RMDs. The organisation counts 

approximately 300 individual members. 



• Raising awareness about RMD’s 

• Establishing groups for children and parents 

• Education for people with RMD’s 

• Good communication with politicians and 

lobbying 

• Establishing self management courses for people 

with RMD’s 


7

Hrvatska Liga 

Protiv Reumatizma 

Croatian League 


8 


Street: Vinogradska 29 

City/Town: Zagreb 

ZIP/Postal Code: Hr – 10000 

Country: Croatia 

Tel: 0038 513 787 248 

Email: liga@rheuma.hr 

Website: www.reuma.hr 


of ParE 

organisations 

2013 



President: Simeon Grazio 

Treasurer: Želimir Vukosav 


Secretary: Frane Grubišić 


Name: Frane Grubišić 

Email: frane.grubisic@zg.t-com.hr/ 

franegrubisic@gmail.com 

Tel: 0038 513 787 248 


CONTENTS 

Hrvatska liga Protiv reumatizma was 





• Connecting medical experts and people with RMDs 

• Provide information and education 

All inflammatory, degenerative, metabolic and extra 

articular RMDs including scleroderma are represented 

by the organisation. The organisation has regional and 

local branches covering the whole country. 

There is no paid staff working for the organisation at 

present. People with RMDs and health professionals 

are on the board. The organisation has more than 

5500 individual members, most of them patients. 

Twenty-six educational booklets were published, while 

official journal “Reuma” is published regularly, twice a year. 

One of the largest recent campaigns was the promotion 

of the EULAR Charter for Work in the parliament and 

throughout the country. Apart from regular activities 

(lectures, round-tables) public actions are especially 

intensive during Bone and Joint Decade World Days. 



• Financial issues - partnership with companies and 

state institutions 

• Participation in international and European 

scientific events in the field of rheumatology 


• Establishing a network of volunteers to carry out 

projects 

• Providing facilities for rehabilitation and medical 

and other devices (wheelchairs, orthoses) to the 

members of the organisation who need them 

without charge. 

No youth activities at present.


of ParE 

organisations 

2013 

Αντιρευματικος Συνδεσμος 

Κυπρου 

CYPLAR - Cyprus League 



Street: Onisillou 16 

City/Town: aglantzia / Nicosia 

ZIP/Postal Code: CY – 2121 

Country: Cyprus 

Tel: 0035 722 428 285 

Email: cyplar@cytanet.com.cy 

Website: www.rheumatism.org.cy 



President: Marios Kouloumas 

Treasurer: Despo Charalambous Demetriou 


Secretary: Andri Phoka 


Name: Marios Kouloumas 

Email: Kouloumas.m@cytanet.com.cy 

Tel: 0035 722 428 285 



50–100 members for 18-29 year olds, offering 

workshops, educational activities and social events. 

Name: Angela Ieronimidou 

Email: ang-iero@hotmail.com 

Tel: 0035 799 542 010 

Website: www.rheumatism.org 


CONTENTS 

CYPlar was founded in 1984. 











vasculitis, Sjogren’s, myositis, MCTD, Still’s, Reynaud 

and Wegener’s. The organisation has local branches in 

the three main cities of the country. They are run by 3 

full- time and 2 part- time paid staff and 85 volunteers. 

In total the organisation has about 3850 individual 

members. One of the largest recent campaigns was 

the start of a Forum together with the Ministry of 

Health in Cyprus for the development of a strategy 

to deal with RMDs. Another significant achievement 

was the improvement of state hospital treatment for 

people with RMDs, bearing in mind that there are no 

rheumatology clinics in the state hospitals. 



• Access to medical care, foundation of a state 

rheumatology clinic 

• Access to rehabilitation care 

• Access to pharmaceutical care and the latest 

treatments 

• Supporting RMD patients in several different ways 

• Informing and sensitising the general public 

• Expanding the organisation across Cyprus and 

becoming the voice of all RMD patients 

9

Revma Liga v ČR 

Czech League 


10 


Street: Na slupi 4 

City/Town: Prague 


of ParE 

organisations 

2013 

ZIP/Postal Code: CZ – 12850 Prague 2 

Country: Czech republic 

Email: revmaliga@email.cz 

Website: www.revmaliga.cz 



President: Jan Janatka, Ing 

Treasurer: Alexandra Musilová 


Secretary: Vera Matejková 


Name: Hana Smucrova / Alena Slamova 

Email: smucrova.hana@gmail.com / 

aslamova1@seznam.cz 

Tel: 0042 023 407 522 2 / 

0042 060 466 408 4 


CONTENTS 

revma liga v ČR was founded in 1991. 







• Provide patient education 

• Enable easy access to physiotherapy for people 

with RMDs 



ankylosing spondylitis, juvenile arthritis, osteoarthritis, 

lupus (SLE) and scleroderma. The organisation has 

6 local branches which cover the south and north 

part of the country and they are run by volunteers 

with RMDs. In total the organisations counts 320 

individual members. 

The most important topics for the organisation in the 

coming years are: 


• Establishing legislation for people with RMDs 

• Increasing the number of members for the 

organisation, including also young people with 

RMDs 

• Building a strong network of branches 

• Providing patient education and training 

• Providing rehabilitation services to members in all 

regions 



of ParE 

organisations 

2013 

Gigtforeningen 

The Danish 

Rheumatism Association 


Street: Gentoftegade 118 

City/Town: Gentofte 

ZIP/Postal Code: DK – 2820 

Country: Denmark 

Tel: 0045 397 780 00 

Email: info@gigtforeningen.dk 

Website: www.gigtforeningen.dk 



President: Mikael O. Olufsen 


Secretary: Lene Witte 


Name: Connie Ziegler 

Email: cziegler@gigtforeningen.dk 

Tel: 0045 397 780 38 




members meetings, lectures, social activities, weekend 

seminars, etc. 

Email: fnug@fnug.dk 

Tel: 0045 418 195 45 

Website: www.fnug.dk 


CONTENTS 

The Danish rheumatism association 

was founded in 1936. 


• Improve the quality of life for people with 

rheumatic and musculoskeletal diseases (RMDs) 

• Influence politicians and other decision makers 

All types of RMDs are represented by the organisation. 

The organisation has 22 regional groups which 

cover the whole country and they are run by local 

boards consisting of volunteers. The total number of 

members is approximately 78800 individual members. 

One of the largest recent campaigns was the 

AquaPunkt, a special training programme in water 

for people with muscle and joint problems. The 

programme takes place in almost every swimming 

bath in Denmark and is an extremely popular and 

helpful activity for people with problems in joints 

and muscles. 



• Raising awareness about RMDs among politicians 

• Developing regular rehabilitation programmes for 

people with RMDs 

11

12 


of ParE 

organisations 

2013 

Eesti Reumaliit 

Estonian Rheumatism Association 


Street: Toompuiestee 10 

City/Town: Tallin 

ZIP/Postal Code: EE – 0142 

Country: Estonia 

Tel: 0037 253 435 501 

Email: reuma@reumaliit.ee 

Website: www.reumaliit.ee 



President: Ülle Kullamaa 

Treasurer: Terje Karp 


Secretary: Marek Jaakson 


Name: Ülle Kullamaa 

Email: ulle@reumaliit.ee 

Tel: 0037 255 567 142 




Information days about RMDs 

Name: Ingrid Pöldemaa 

Email: reumanoored@gmail.com 

Tel: 0037 252 244 79 

Website: www.eestinoortereumaliit.com 


CONTENTS 

Eesti reumaliit was founded in 1990. 




• Support the prevention of RMDs 


All types of RMDs are represented by the 

organisation, which has 12 organisations as 

members. The head office is located in Tallinn and is 

run by 6 paid staff (half-time) and many volunteers. 

Two of the largest campaigns during 2012 was 

the Annual Nordic Walking day that was organised 

nationally. 



• Development of a national strategy for RMDs 

Traditional projects in 2013: 

• Conference on rehabilitation 

• Summer seminars 

• Nordic Walking Day 

• Rheumaforum 

International Cooperation 

• European League Against Rheumatism (EULAR) 

• Finnish Rheumatism Association (FRA) 

• Swedish Rheumatism Association (SRA)


of ParE 

organisations 

2013 

Suomen Reumaliitto Ry 

The Finnish 



Street: Iso roobertinkatu 20 – 22 a 

City/Town: Helsinki 

ZIP/Postal Code: FI – 00120 

Country: Finland 

Tel: 0035 894 761 55 

Email: info@reumaliitto.fi 

Website: www.reumaliitto.fi 



President: Keijo Tauriainen 

Treasurer: Evita Salo 


Secretary: Mervi Ahlroth 


Name: Lea Salminem 

Email: lea.salminen@reumaliitto.fi 

Tel: 0035 840 554 682 1 


CONTENTS 

The Suomen reumaliitto ry 








• Improve co-operation between patients and 

health care professionals 

All types of RMDs are represented by the organisation, 

which has 164 local branches covering the whole 

country. The branches are run by volunteers with RMDs, 

supported by 19 staff members in the headquarter. 

The organisation has around 45,000 individual 

members. One of the largest recent campaigns the 

“Easy to use packaging campaign”; “World record in 

Nordic Walking”; Veshumppa (a new form of aquatic 

sport), dancing in water, developed and launched by 

the organisation) and granting research grants from the 

organisation’s research fund. 



• To publish updated information on RMDs to patients, 

health care professionals as well as the general public 

on multiple platforms (internet, print, media) 

• Young people with RMDs 

• Update diagnose-specific support 

• Update the rights monitoring and lobbying 

activities of the Association 


13

14 


of ParE 

organisations 

2013 

AFLAR - Association Française 

de Lutte Anti-Rhumatismale 

French League 



Street: 2 rue Bourgon 

City/Town: Paris 

ZIP/Postal Code: Fr – 75013 

Country: France 

Tel: 0033 145 803 000 

Email: contact@aflar.org 

Website: www.aflar.org 



President: Laurent Grange 

Treasurer: Claire Cardon 


Secretary: Françoise Alliot-Launois 


Name: Jean-Noël Dachicourt 

Email: jeannoel.dachicourt@aflar.org 

Tel: 0033 145 803 000 


There is a youth organisation in planning 

Name: Jean-Noël Dachicourt 

Email: jeannoel.dachicourt@aflar.org 

Tel: 0033 145 803 000 


CONTENTS 

aFlar was founded in 1928. 

For more than 80 years, AFLAR has acted to achieve 

the major objectives of the fight against rheumatic 

and musculoskeletal diseases (RMDs): 

• Raise general awareness to inform about the 

impacts of such diseases beyond clichés 

• Carry out a better knowledge on RMDs, their care, 

their prevention and the state of research 

• Improve the quality of care by transmitting savoirfaire 

and ensuring health professionals training 

• Help patients live better with the disease and be part 

of the health process 

• Bring patients to become actors of their own care 

and implicate them in the reflection about health 

policies 

• Allow for equal access to care for each and every 

patient suffering from RMDs 

• Make governments and decision-makers fully 

understand and realise the human, social and 

economical weight of RMDs 

• Improve social care and the resources for prevention 

and research 

All types of RMDs, and all types of treatments, and 

all categories of professionals and institutions are 

included and represented by the organisation. Several 

specialised patient associations are affiliated to AFLAR. 

AFLAR is thus transversal and multidisciplinary. The 

total number of members, sympathizers and affiliated 

association members is about 6500 individuals. 

Membership is not necessary to get access to AFLAR’s 

services (information, help-line...). 

One of the largest recent campaigns was against 

Osteoporosis (www.osteoporosepasdaccord.org) and 

Osteoarthritis (www.stop-arthrose.org). 

Plans for 2013 : Development of a youth group and a 

French charter for work adaptation.


of ParE 

organisations 

2013 

HBO HOPA 

NGO NORA Non-governmental 

Organisation for Rheumatism 

& Arthritis 


Street: 28–1/1 Vasil Gjorgov Str. 

City/Town: Skopje 

ZIP/Postal Code: FY – 1000 

Country: Former Yugoslav republic 

of Macedonia 

Tel: 0038 923 214 365 

Email: office@nora.mk 

Website: www.nora.mk 



President: Lazo Efremov 

Treasurer: Senka Naumovska 


Secretary: Suzana Bozharova 


Name: Dragan Chichikj - Vice President 

Email: chichich@gmail.com 

Tel: 0038 970 395 987 


There is an youth organisation comprising up to 

10 members 

Name: Dragan Chichikj 

Email: chichich@gmail.com 

Tel: 0038 970 395 987 


CONTENTS 

HBO HOPa was founded in 2008. 






and to enable access to modern medication 


• Educate people with RMDs 




arthritis, lupus (SLE), scleroderma, vasculitis, and 

multiple sclerosis. There is a head office in Skopje 

that is run by 2-4 members of paid staff and 1-2 

volunteers. There are about 700 members in total. 


establishment and operation of the educational centre 

-NORA- and the frequent presence of the organisation 

and its presentation of activities in the media. 



• Establishing a network of people with RMDs 

• Promoting education for people with RMDs and 

Health Professionals. 

• Improving standards of care in the country 

through close cooperation with government 

15

16 


of ParE 

organisations 

2013 

Deutsche Rheuma-Liga 

Bundesverband e.V. 

German League 



Street: Maximilianstrasse 14 

City/Town: Bonn 

ZIP/Postal Code: DE – 53111 

Country: Germany 

Tel: 0049 228 766 060 

Email: bv@rheuma-liga.de 

Website: www.rheuma-liga.de 



President: Prof. Dr. med. Erika Gromnica-Ihle 

Treasurer: Claus Heckmann 


Secretary: Ursula Faubel 


Name: Ursula Faubel 

Email: bv.faubel@rheuma-liga.de 

Tel: 0049 228 766 060 


There is an youth organisation comprising 100–500 

members for 1) Young people up to 35 years 2) parents 

with children, offering Meetings, workshops and seminars 

on regional and national level, awareness-raising events, 

political lobbying with action plan for children and young 

people with arthritis, website, Facebook, Internet forums 

Name: Monika Mayer 

Email: bv.mayer@rheuma-liga.de 

Tel: 0049 228 766 062 2 

Website: http://geton.rheuma-liga.de/ 


CONTENTS 

Deutsche rheuma-liga Bundesverband 

e.V. was founded in 1970. 

The overall aim of the organisation is to 

improve the situation of people with arthritis 

and rheumatism. 

The organisation achieves this goal by: 

• Supporting the member organisations in organizing 

self-help activities and services for people with arthritis 



• Campaigning for the improvement of medical 

treatment, psychological and social support 

• Stimulating and supporting research 

All types of RMDs, musculoskeletal, inflammatory or 

degenerative, are represented by the organisation. The 

organisation has 16 regional (Länder-) organisations 

which cover the whole country and three nationwide 

working member organisations for people with 

ankylosing spondylitis, lupus erythematosus and 

scleroderma. 

The umbrella organisation has 18 paid staff members. 

The regional organisations have additional staff 

members. 11.000 volunteers are working for Deutsche 

Rheuma-Liga. In total the Deutsche Rheuma-Liga 

counts more than 260.000 individual members in the 19 

member organisations. The most recent campaign was 

designed to stimulate people with all forms of arthritis to 

become more active against the pain caused by RMDs. 



• Improving access to rheumatologists 

• Increasing the number of younger members 

• Improving information and advice services for 

people with RMDs

E.Λ.Ε.Α.Ν.Α. 

Hellenic League 




of ParE 

organisations 

2013 

Street: Kipselis 2 

City/Town: athens 

ZIP/Postal Code: Gr – 11362 

Country: Greece 

Tel: 0030 210 823 730 2 

Email: info@arthritis.org.gr 

Website: www.arthritis.org.gr 



President: Dimitrios Kassimos 

Treasurer: Machi Salamaliki 


Secretary: Vaso Economopoulou 


Name: Dimitrios Kassimos / Nadia Tsiliakou 

Email: info@arthritis.org.gr / 

helpline@arthritis.org.gr 

Tel: 0030 693 701 306 4 


There is a youth organisation comprising 10–50 

members for 8-25 year olds, offering summer camp 

for kids with juvenile arthritis and Group therapy. 

Name: Cristina Psoma & Roula Trivizaki 

Email: cristinapsoma@gmail.com / 

spirtoulis81@gmail.com 

Tel: 0030 210 823 730 2 

Website: www.facebook.com/people/Ελληνική- 

Εταιρεία-Αντιρευματικού- 

Αγώνα/100003578138693 


CONTENTS 

EΛΕΑΝΑ was founded in 1978. 






• Promote contact with fellow patients 


organisation are: Rheumatoid arthritis, ankylosing 

spondylitis, osteoarthritis, psoriatic arthritis, juvenile 

arthritis, lupus, fibromyalgia and vasculitis. The 

organisation has two regional branches in Patra, 

Peloponnese and Thessaloniki, Macedonia. The head 

office is run by 2 paid staff members. In total the 

number of members is about 700 individuals. 

Large recent campaigns included: 

• Establishing Standards of Care in Greece 

• First annual meeting for people with RMDs 

• Councelling seminars with nurses for people 

with RMDs 

• Summer camp for kids with juvenile arthritis 



• Increasing awareness about RMDs 

• Increasing the number of members and number 

of branches 

• Establishing a network of volunteers 

• Motivating policymakers to take action about 

matters related to people with RMDs 

• Increasing activities for patients wellbeing (e.g group 

therapy, reflexology, swimming groups, etc.) 

17

18 


of ParE 

organisations 

2013 

Magyar Reumabetegek 

Egyesülete 

Hungarian League of Patients 

with Rheumatic Diseases 


Street: Ürömi utca 56 

City/Town: Budapest 

ZIP/Postal Code: Hu – 1023 

Country: Hungary 

Tel: 0036 132 633 96 

Email: ortutay.judit@mail.orfi.hu 

Website: www.izuletibetegsegek.org 



President: Dr. Judit Ortutay 


Secretary: Dr. Sándor Majtényi 


Name: Judit Ortutay 

Email: ortutay.judit@mail.orfi.hu 

ortutayj@t-online.hu 

Tel: 0036 308 506 620 


CONTENTS 

Magyar reumabetegek Egyesülete 








• Expand the organisation and to establish regional 

branches 

• Promote education and self-management 




arthritis, lupus (SLE), scleroderma, osteoporosis, 

osteoarthritis. The organisation has 26 member 

organisations either disease specific or regional and 

these are run by volunteers. One of the largest recent 

campaigns was The Women in RA exhibition in the 

Ministry of Health together with a special exhibition in 

one of the busiest malls in Budapest. 



• Work and reintegration in the workforce 

• Patient education 


• Expanding the volunteers network 

• Access to the latest therapies 


Gigtarfélag Íslands 

Icelandic League 



Street: Ármúli 5 

City/Town: reykjavík 

ZIP/Postal Code: IS – 108 

Country: Iceland 

Tel: 0035 453 036 00 

Email: gigt@gigt.is 

Website: www.gigt.is 


of ParE 

organisations 

2013 



President: Einar S. Ingolfsson 

Treasurer: Gudrun Birna Jörgensen 


Secretary: Emil Thoroddsen 


Name: Emil Thoroddsen 

Email: emilthor@gigt.is 

Tel: 0035 453 036 00 



10–50 members for 18-35 year olds, offering formal and 

informal meetings, Facebook activities. 

Name: Thrunn Haraldsdottir 

Email: thorunn@gigt.is 

Tel: 0035 453 036 00 

Website: www.gigt.is 


CONTENTS 

Gigtarfélag Íslands was founded in 1976. 





• Promote education for people with RMDs 

• Provide information and support to people with RMDs 


organisation including fibromyalgia and osteoporosis. 

The head office is in the capital Reykjavik, run 

by staff members and volunteers with RMDs. In 

Reykjavik and nearby communities live 2/3 of the 

Icelandic population. The organisation has regional 

branches all over the country. These branches are 

exclusively driven by volunteers with backup and 

support from the head office. In total the organisation 

counts about 5.200 individual members. 


brochure Children have rheumatic diseases too that 

was sent to all elementary schools, kindergarten and 

health care centres, followed by media coverage and 

visits to all welfare centres in Reykjavik. 



• The effects of the economical recession from 

2008, cuts in the healthcare sector and the 

welfare system 

• To meet the increasing need for informative and 

counselling activities for our members 

19

Arthritis Ireland 

20 



of ParE 

organisations 

2013 

Street: 1 Clanwilliam Square, 

Grand Canal Quay 

City/Town: Dublin 

ZIP/Postal Code: Ir – 2 

Country: Ireland 

Tel: 0035 316 618 188 

Email: info@arthritisireland.ie 

Website: www.arthritisireland.ie 



President: John O’Flynn 

Treasurer: TBC 


Secretary: Michael Kelly 


Name: John Church 

Email: jchurch@arthritisireland.ie 

Tel: 0035 316 470 205 


There is a youth organisation the Young Arthritis Network 

comprising 10–50 members for 18-35 year olds, offering 

information events specific to this age group. Independence 

breaks, positive futures workshops, social gatherings, 

educational events 

Name: Laura Hickey 

Email: lhickey@arthritisireland.ie 

Tel: 0035 316 618 188 

Website: www.juvenilearthritis.ie 


CONTENTS 

arthritis Ireland was founded in 1981. 


• Community care and support which improves 

quality of life 

• Provide education for patients with rheumatic 

and musculoskeletal diseases (RMDs) 

• Support medical research which will directly 

affect patient care 

• Lobbying for better patient services 


organisation. The organisation has 20 local 

branches covering the whole of the country. These 

local branches are run by 9 members of paid staff 

and volunteers with RMDs. In total the number of 

members is about 1.200 individuals. 

One of the largest recent campaigns was a lobbying 

programme to raise awareness of the lack of 

services for children with RMDs. 



• Implementation of self-management courses 

• Exercise and Arthritis 

• Young people aged 20-40 with RMDs 

• Fit for Work Programme 

• Improvement of rheumatology services 

• Funding of academic chairs in rheumatology


of ParE 

organisations 

2013 

INBAR Foundation 

Israel Arthritis Foundation 


Street: 16 Hanaziv St 

City/Town: Tel aviv 

ZIP/Postal Code: Il – 67018 

Country: Israel 

Tel: 0097 235 613 832 

Email: inbar-il@015.net.il 

Website: www.inbar.org.il 



President: Rami Blass 

Treasurer: Moshe Kapner 


Secretary: Osnat Atar 


Name: Ofra Balaban 

Email: amotat_c@netvision.net.il 

Tel: 0097 235 047 778 


CONTENTS 

INBar Foundation was founded in 1985. 


• Support patients with rheumatic and 


• Raise awareness about RMDs 

• Provide information about latest technologies 

and therapies 


organisation. The organisation has only a head 

office run by two part-time paid staff members and 

volunteers. The total number of members is about 

4.000 individual members. 

One of the largest recent campaigns was a 

conference for children with RMDs and their parents 

and a specially designed project for the use of 

everyday items by people with RMDs. 



• Establishment of support groups for people with 

rheumatoid arthritis 

• Establishment of support groups for children 

and parents 

• Organisation of conferences in order to raise 

awareness about RMDs 

• Enabling patients to travel to a spa for rehabilitation 


21

22 


of ParE 

organisations 

2013 

ANMAR - Associazione 

Nazionale Malati Reumatici 

Italian Rheumatism Association 


Street: Istituto Elena Bettini - 

Via Nicola Zabaglia n.19 

City/Town: roma 

ZIP/Postal Code: IT – 00153 

Country: Italy 

Tel: 0039 334 804 274 

Email: info@anmar-italia.it 

Website: www.anmar-italia.it 



President: Gabriella Voltan 

Treasurer: Renato Gianelli 


Secretary: Maria Grazia Pisu 


Name: Renato Giannelli & Sara Severoni 

Email: renatogiannelli@virgilio.it / 

s.severoni@libero.it 

Tel: 0039 334 804 274 8 

0039 349 056 296 1 


CONTENTS 

aNMar was founded in 1985. 




• Strengthen and consolidate relations with regional 

organisations, other associations and organisations 

that take care of patients’ rights inside and outside 

Italy 


• Lobby for issues related to RMDs 


organisation. It’s a non-profit organisation nationwide, 

regionally and locally; it’s an umbrella association with 

17 regional organisations (with about 12.000 individual 

members). These are run by volunteers with RMDs. 



• lnterfacing with the ltalian political lnstitutions (central 

and regionally) to issue measures about prevention, 

care and rehabilitation of people with RMDs in order 

to facilitate their integration on the operative contest of 

the social-economic life of the country (Fit for work) 


• Motivating new volunteers and expanding the 

volunteers network 

• Fundraising 



of ParE 

organisations 

2013 

LKLSSB - Latvijas Kaulu, locītavu 

un saistaudu slimnieku biedrība 

Latvian Association of Bone, Joint and 

Connective Tissue Diseases’ Patients 


Street: Nicgales 21–49 

City/Town: riga 

ZIP/Postal Code: lV – 1035 

Country: latvia 

Tel: 0037 129 824 155 

Email: marika3@inbox.lv 

Website: www.reimatik.lv 



President: Janis Arajas 

Treasurer: Rudite Priede 


Secretary: Marika Karlsone 


Name: Marika Karlsone 

Email: marika.karlsone@gmail.com 

Tel: 0037 129 824 155 


There is a youth organisation comprising up to 10 

members for 18-30 year olds 

Name: Marika Karlsone 

Email: marika3@lnb.lv 


CONTENTS 

l.K.l.S.S.B was founded in 1998. 







• Provide education for people with RMDs 

• Establish groups of people who share the 

same interests 



ankylosing spondylitis, juvenile arthritis, lupus (SLE) 

and vasculitis. The organisation has 5 regional 

branches which cover a part of the country and 

they are run by volunteers with RMDs. In total the 

organisation counts about 650 individual members. 


conference People with RA - change your quality 

of life, do it by yourself. 



• Renew Youth group work by their own leadership 

• Patient school regularity 

• Lobbying for access to biologics treatment 

• Renovating the organisation’s website 

• Becoming more involved in social media 

• Hiring a professional project manager 

23

24 


of ParE 

organisations 

2013 

Lietuvos Artrito Asociacija 

Lithuanian Arthritis Association 


Street: Zygimantu 9 

City/Town: Vilnius 

ZIP/Postal Code: lT – 01102 

Country: lithuania 

Tel: 0037 061 404 632 

0037 067 578 089 

Email: artritas@mail.lt 

Website: www.arthritis.lt 



President: Ona Telyceniene 

Treasurer: Aldona Liutkuviene 


Secretary: Marijona Kuliene 


Name: Jolanta Dadoniene 

Email: jolanta.dadoniene@ekmi.vu.lt 

Tel: 0037 069 881 667 


CONTENTS 

lietuvos artrito asociacija was 









organisation are the following: rheumatoid arthritis, 

osteoarthritis, ankylosing spondylitis, psoriatic arthritis, 

juvenile arthritis. The organisation has 9 independent 

regional organisations which cover the whole country 

and they are run by 3 leading staff members and 

volunteers with RMDs. In total the organisation has 

approximately 2.000 individual members. 

One of the largest recent campaigns was the World 

Arthritis Day 2012 conference in Parliament of 

Lithuanian Republic and the press conference. 



• Lobbying for reimbursement medications for 


• Young people to join the organization 

• Patient education 

• Physical activity 

• “Arthritis” magazine (regular publishing) 

• Fit for Work Programme 



of ParE 

organisations 

2013 

ARAM - Arthritis and 


Malta 


Street: P.O. Box 55 

City/Town: Birkirkara 

ZIP/Postal Code: MT – BKr 1000 

Country: Malta 

Tel: 0035 699 259 532 

Email: aramalta@gmail.com 



President: Mary Vella 


Secretary: Marie-Therese Camenzuli 


Name: Mary Vella 

Email: mary_vella@hotmail.com 

Tel: 0035 699 233 454 


There is a youth organisation comprising up to ten 

members for 16-30 year olds 

Name: Lara Vella 

Email: laravella13@hotmail.com 

Tel: 0035 699 205 307 


CONTENTS 

araM was founded in 2007. 




• Campaign for equal rights and treatment and 

to represent people with RMDs locally and 

internationally 






arthritis, fibromyalgia, scleroderma and osteoporosis. 

The organisation has only a central administration 

which is run by volunteers with RMDs. In total the 

organisation counts about 200 individual members. 



• Providing education and information about RMDs 

to members 

• Encouraging people with RMDs to remain in work 

• Working with government to promote healthy 

living and self management programmes 

• Pain and fatigue 

• Youth and children 

25

26 


of ParE 

organisations 

2013 

Association for Helping Persons 

with Rheumatic Diseases 


Montenegro 


Street: Bulevar Svetog Petra 

Cetinjskog 65 

City/Town: Podgorica 

ZIP/Postal Code: MO – 81000 

Country: Montenegro 

Tel: 0038 269 506 022 

Email: senas@t-com.me 



President: Senka Stijepovic 

Treasurer: Lidija Brajovic 


Secretary: Igor Medojevic 


Name: Senka Stijepovic 

Email: senas@t-com.me 

Tel: 0038 269 506 022 


CONTENTS 

association for Helping Persons with 

rheumatic Diseases was founded in 2003. 










arthritis, osteoporosis, fibromyalgia, lupus (SLE), 

scleroderma, vasculitis, Sjogren, myositis, and 

myalgia. The organisation has a central administration, 

run by volunteers with RMDs. In total the organisation 

counts about 2.150 individual members. 


Let’s work together campaign (introducing patients 

to disability rights laws and discovering new 

opportunities for people with RMDs in the workplace). 



• Better access to education and work 

• Access to rehabilitation and the latest therapies 

• Implementing EULAR Charter for Work


of ParE 

organisations 

2013 

Norsk Revmatikerforbund 

Norwegian League 



Street: P.O. Box 2653 Solli 

City/Town: Oslo 

ZIP/Postal Code: NO – 0203 

Country: Norway 

Tel: 0047 225 476 00 

Email: post@revmatiker.no 

Website: www.revmatiker.no 



President: Jan Grund 


Secretary: Tone Granaas 


Name: Jan Grund 

Email: forbundsleder@revmatiker.org 

Tel: 0047 464 105 77 



members for 0-35 year olds, offering family gatherings 

0–14 years; Teenage gatherings 13–17 years; Youth 

weekend 18–35 years 

Name: Joachim Sagen 

Email: burgnorge@revmatiker.no 

Tel: 0047 225 476 14 

Website: www.revmatiker.no 


CONTENTS 

Norsk revmatikerforbund (NrF) was 



• Raise awareness about Rheumatic and 

Musculoskeletal Diseases (RMDs) 





organisation. The organisation consists of 225 local 

groups with local branches in all of our 19 counties. 

Within the branches there are individual diagnostic 

groups and children and youth in all counties. 

At the national level and in the counties we are a 

total of 30 paid employees. 

In addition, in all counties and local groups there are 

volunteers. The total number of individual members 

is about 34.000 people. 

In recent years we have worked with economic 

perspective on health and work. In this work we 

have had several different campaigns, conferences 

and political lobbying. 



Strengthen the organization - increased growth 

in membership and still have a high focus on the 

rehabilitation field. 

27

28 


of ParE 

organisations 

2013 

Polskie Towarzystwo Reumatologiczne 

- Komitet Spoleczny 

Polish Rheumatological Society - 

PARE committee 


Street: Spartanska 1 

City/Town: Warsaw 

ZIP/Postal Code: Pl – 02 63 

Country: Poland 

Tel: 0048 717 343 300 

Email: piotr.wiland@ptr.net.pl 



President: Prof. Piotr Wiland 

Treasurer: Dr. Marcin Stajszczyk 


Secretary: Beata Maciazek-Chyra 


Name: Dr. Bozena Moskalewicz 

Email: bozena.moskalewicz@gmail.com 

Tel: 0048 225 421 416 



10–50 members for up to 30 years old, offering: Website 

Twitter, Facebook, yearly national conferences with 

workshops 

Name: Monika Zientek 

Email: m.zientek@3majmysierazem.pl 

Website: www.3majmysierazem.pl 


CONTENTS 

Polskie Towarzystwo reumatologiczne - 

Komitet Spoleczny was founded in 1930. 


• Raising awareness about rheumatic and 


• Supporting the development of rheumatology 

• Providing permanent education of specialists 

and empowering and representing the society of 

rheumatologists in Poland 


organisation. The organisation has local branches 

covering the whole country, run by volunteer health 

professionals. In total the organisation has about 

2000 individual members, mostly rheumatologists. 

One of the most recent successful campaigns was 

the National Rheumatology Congress in June 2012 



• Raising awareness about RMDs in general society 

and key stakeholders 

• Assuring governmental funds for innovative 

prevention and treatment of RMDs


of ParE 

organisations 

2013 

LPCDR - Liga Portuguesa 

Contra as Doenças Reumáticas 

Portuguese League 



Street: avenida de Ceuta-Norte, 

13 loja 2 

City/Town: lisbon 

ZIP/Postal Code: PT – 1350–410 

Country: Portugal 

Tel: 0035 121 364 877 6 

Email: lpcdr@lpcdr.org.pt 

Website: www.lpcdr.org.pt 



President: Dr. Augusto Faustino 

Treasurer: Diamantina Rodrigues 


Secretary: Prof. Margarida Espanha 


Name: Elsa Frazão Mateus 

Email: elsafrazaomateus@gmail.com 

Tel: 0035 191 677 914 5 


CONTENTS 

liga Portuguesa Contra as Doenças 

reumáticas was founded in 1982. 







• Promote contact with fellow organisations 





vasculitis, Sjogren’s, Behçet disease, osteoporosis 

and lumbago. 

The organisation has no local branches, is run by 

one member of paid staff, the Board of Directors and 

other individuals which are mostly volunteers with 

RMDs and rheumatologists. In total the number of 

individual members is approximately 500. 




• Extending the network of volunteers 

• Acquiring expertise in certain areas 


29

30 


of ParE 

organisations 

2013 

Liga Romana 

contra Reumatismului 

Romanian League 



Street: Strada Thomas Masaryk Nr. 5 

City/Town: Bucharest 

ZIP/Postal Code: rO – 70231 

Country: romania 

Tel: 0040 212 116 848 

Website: www.reumatism.ro 



President: Dr. Catalin Codreanu 

Treasurer: Ileana Ganea 


Secretary: Marieta Stoicescu 


Name: Codruta Zabalan 

Email: codruta.filip@gmail.com 

Tel: 0040 721 240 545 


There is a youth organisation comprising up to 10 

members for 18-35 year olds. At present just recruiting 

members. A private group has been created on 

Facebook. Long term objectives to guide the young 

people diagnosed with RMD and to offer psychological 

support especially at the start of the disease. 

Name: Florian Catrina 

Email: fmcatrina@gmail.com 

Tel: 0040 758 117 040 


CONTENTS 

liga romana contra reumatismului 







• Ensure permanent and easy access to accurate 

and high quality information and practical guidelines 

on how to cope with the disease in everyday life 


All types of RMDs are represented by the organisation. 

The organisation has no local branches and it is run by 

volunteers with RMDs. The organisation counts about 

125 individual members. The organisation counts 550 

members enlisted as patients and about 35 members 

enlisted as doctors and HPs. 


organisation of an online essay competition on the topic: 

Why do we need and why do we wish/want to celebrate 

WAD? The best essay was published on the website. 



• Providing education for people with RMDs 


• Encouraging industry involvement in developing 

media campaigns and joint messages 

• Campaigning for early diagnosis 

• Training of volunteers in establishing medical and 

social data referring to members of organisations 

• Establishing local branches all over the country


of ParE 

organisations 

2013 

N.A.D.E.G.D.A. - National Public 

Organisation of disabled people 

Russian League Against Rheumatism 


Street: fl. 99, st. akademika Vargy 22 

City/Town: Moscow 

ZIP/Postal Code: ru – 177133 

Country: russian Federation 

Tel: 0084 953 384 625 

Email: buna17@mail.ru 

Website: www.revmo-nadegda.ru 



President: Natalia Bulgakova 

Treasurer: Larisa Kameneva 


Secretary: Igor Golov 


Name: Natalia Bulgakova 

Email: buna17@mail.ru 

Tel: 0084 953 384 625 


CONTENTS 

N.a.D.E.G.D.a was founded in 2006. 








organisation. The organisation has 47 regional 

branches, run by volunteers with RMDs, covering 

the whole country. 



• Easy (free) access to medicines 

• Creating outpatients specialised 

rheumatology centres 


• Establishing offices for all regional branches 

• Educating volunteers in leading regional groups 


31

32 


of ParE 

organisations 

2013 

ORS - The Association of 

Rheumatic Diseases Patients 

of the Republic of Serbia 

Serbian League Against Rheumatism 


Street: resavska 69 

City/Town: Belgrade 

ZIP/Postal Code: CS – 11000 

Country: Serbia 

Tel: 0038 111 361 237 6 

Website: www.ors.rs 



President: Mirjana Lapcevic 

Treasurer: Zora Radovic 


Secretary: Zora Radovic 


Name: Marija Kosanovic 

Email: mkosanovic@ors.rs 

Tel: 0038 164 280 205 9 



50–100 members under 18, offering education, 

consultation, re-socialization and psychological support 

Name: Sonja Ilic 

Email: ilicson@gmail.com 

Tel: 0038 164 131 600 6 

Website: www.nasedete.com 


OrS was founded in 2007. 




• Support people with RMDs by providing 

education and rehabilitation services 

CONTENTS 

All RMDs are represented by the organisation. 

The organisation has 5 local branches, run by 

volunteers with RMDs, covering the whole country. 

The organisation counts about 1.100 individual 

members. One of the largest recent campaigns 

was the World Arthritis Day celebration which was 

promoted successfully through the media. 



• Work and re-integration in the workforce for 


• Providing personal assistance to people 

with disabilities 

• Providing education for people with RMDs 

• Campaigning for prevention and early diagnosis 

• Campaigning for p and regular rehabilitation 

• Competing for the projects which can improve 

quality of life of people with RMDs


of ParE 

organisations 

2013 

Liga proti reumatizmu 

Slovak League 



Street: Nábrezie I. Krasku 4 

City/Town: Piestany 

ZIP/Postal Code: SK – 92101 

Country: Slovakia 

Tel: 0042 133 796 911 1 

Email: liga@mojareuma.sk 

Website: www.mojareuma.sk 



President: Jana Dobšovicová Cernáková 

Treasurer: Anna Jursíková 


Secretary: Katarína Barancíková 


Name: Martina Godányiová 

Email: martinagody@gmail.com 

Tel: 0042 190 588 486 5 



members between 0-35 years old, offering the same 

activities as central league, but concentrating on working 

with children and their parents working with youths 

Name: Zuzana Puzderová 

Email: tajomnik@mojareuma.sk 

Tel: 0042 190 582 186 8 

Website: www.mojareuma.sk 


CONTENTS 

liga Proti reumatizmu was 



• Providing education and information about 

rheumatic and musculoskeletal diseases (RMDs) 

• Improving social services for people with RMDs 

• Improving rehabilitation services 

• Promoting contacts with fellow patients and 

fellow associations 


organisation. The organisation has 14 regional 

branches and 2 clubs (KÍbik-for young people, 

children and their families who suffer from RA, 

Motýlik- for people who suffer from systematic lupus) 

ywhich cover the whole country and are run by one 

member of paid staff and volunteers with RMDs. The 

organisation counts about 1650 individual members in 

16 regional branches. 

One of the largest recent campaigns was a World 

Arthritis Day country race for people with RMDs and 

health professionals, beneficial concert and Prize for 

press and media KROK. 



• improvement of activities for regional branches and 

clubs and their methodological education 

• implementation of EULAR campaigns 


• Providing education to members 

• Improving legislation regarding people with RMDs 

• Improving publication activities 

• Working closer with the media and press 

• Helping and supporting to individuals, groups 

and communities 

33

34 


of ParE 

organisations 

2013 

Društvo revmatikov Slovenije 

Slovenian Rheumatism 

Association 


Street: Parmova 53 

City/Town: ljubljana 

ZIP/Postal Code: SI – 1000 

Country: Slovenia 

Tel: 0038 659 075 360 

Email: drustvo@revmatiki.si 

Website: www.revmatiki.si 



President: Andrej Gregorčič 

Treasurer: Maja Dimnik 


Secretary: Petra Zajc 


Name: Petra Zajc 

Email: petra@revmatiki.si 

Tel: 0038 659 075 360 


There is a youth organisation comprising up to ten 

members under 18 years old, offering support groups 

for children and parents, family weekend seminars with 

lectures, workshops and other training and education, 

rehabilitation courses and creative play 

Name: Petra Zajc 

Email: petra@revmatiki.si 

Tel: 0038 641 575 103 


CONTENTS 

Društvo revmatikov Slovenije was 





• Identify, satisfy, represent and meet the specific 

needs of patients and their advocacy 

• Reduce discrimination and raise awareness for 

the acceptance of differences 

• Promote and develop volunteer work 





ankylosing spondylitis, psoriatic arthritis, juvenile arthritis, 

lupus (SLE). The organisation has 13 local branches all 

over the country, run by 5-10 members of paid staff, as 

well as volunteers with RMDs. The organisation counts 

approximately 1500 individual members. 

In 2011 we wrote an open letter to those responsible 

in the Slovenian health care system in terms of 

waiting times in rheumatology and then had a press 

conference on this topic. In 2012 a national raising 

awareness campaign was launched on treatment of 

inflammatory rheumatic diseases with “biological” 

drugs, importance of early diagnosis, treatment and 

regular monitoring of patients. It culminated in a 

WAD 2012 press conference and publication of the 

booklet “Our ever day. Without pain”! 



• Ongoing campaign for developing state strategy 

against RMDs 

• Improvement of the employment legislation for 


• Improvement of the school system regarding 

students with RMDs 

• Co-creating the disability policy to equalize 

opportunities for disabled people 

• Supporting the studies and scientific work 

(sociological, psychological, biological and clinical 

studies, epidemiology, and studies of related 

diseases) of educational, social, medical and other 

scientific - research institutes in relation to the 

phenomena, rehabilitation and prevention of RMDs


of ParE 

organisations 

2013 

LIRE - Liga Reumatológica Española 

Spanish League Against Rheumatism 


Street: apartado de Correos 6 

City/Town: Madrid 

ZIP/Postal Code: 28980 Parla 

Country: Spain 

Tel: 0034 692 271 099 

Email: lire@lire.es 

Website: www.lire.es 



President: Benito Martos Borrega 

Treasurer: Santos Yuste Zazo 


Secretary: Juan José Díaz 


Name: Loreto Carmona 

Email: loretocarmona@gmail.com 

Tel: 0034 628 578 576 


CONTENTS 

lIrE, since its incorporation as a 

non-profit association in 1973, is 

conducting a major task for raising 

awareness about rheumatic and 

musculoskeletal diseases (rMDs). 

It develops multiple actions, such as: 

• Facilitating the creation and consolidation of new 

associations 

• Holding informative seminars and conferences for 

people with RMDs and doctors 

• Running national projects and specific programs 

for groups at risk of social exclusion 

Its particular purpose is to promote and develop 

the fight against RMDs and their consequences 

both at individual and social level. LIRE develops 

and promotes educational activities aimed at 

prevention and prophylaxis of RMDs, treatment and 

rehabilitation as well as assistance and relief for 

those affected by these diseases, in accordance with 

statutory and regulatory provisions relating to the 

subject. 



• More financial support from pharmaceutical 

companies and state institutions to develop their 

work with patients’ associations 

• Enabling people with RMDs with opportunities for 

greater participation and collaboration at national 

and international level 

• Organising scientific conferences and congresses 

for people with RMDs 


35

36 


of ParE 

organisations 

2013 

Reumatikerförbundet 

Swedish Rheumatism Association 


Street: P.O.Box 12851 

City/Town: Stockholm 

ZIP/Postal Code: SE – 11298 

Country: Sweden 

Tel: 0046 850 580 500 

Email: info@reumatikerforbundet.org 

Website: www.reumatikerforbundet.org 



President: Anne Carlsson 

Treasurer: 


Secretary: Magdalena Olsson 


Name: Anne Carlsson 

Email: anne.carlsson@ 

reumatikerforbundet.org 

Tel: 0046 705 222 565 



over1000 members between 7-32 years old, offering 

support and information, website, courses and 

conferences. They have an office with one employee. 

Name: Caroline Liljegren, Chairperson 

Email: carolinel@ungareumatiker.org 

Tel: 0046 739 594 921 

Website: www.ungareumatiker. 

reumatikerforbundet.org 


CONTENTS 

reumatikerförbundet was founded in 1945. 







• Support research by fundraising 


organisation. The organisation has regional branches 

all over the country. The organisation has about 60-65 

paid members of staff based in head office and in the 

regional branches. These are supported by volunteers 

with RMDs. In total the organisation counts about 

50.000 individual members. 

One of the largest recent campaigns was a campaign 

with focus on the importance of exercise for people 

with RMDs. 



• Develop the value of the membership 

• Define the target groups better 

• Strengthen the public image of our organisation 

• Develop a new webpage that is connected to the 

organisation’s administrative systems 

• Develop the structure of the organisation on local 

and regional levels 

• Follow and to advocate for better conditions in the 

health care structure 

• Develop the fundraising research. To use patient 

research partners in the cooperation with the 

researchers 

• Cooperate with the PARE associations in the 

Nordic Countries 

• Run an international cooperation project together with 

people with RMDs and rheumatologists in Sri Lanka 

• Develop relations with the Swedish MEPs in the 

European Union in order to use their influence in 

European work 

• Develop our activity in EULAR


of ParE 

organisations 

2013 

RLS - Rheumaliga Schweiz 

Swiss League 



Street: Josefstrasse 92 

City/Town: Zürich 

ZIP/Postal Code: CH – 8005 

Country: Switzerland 

Tel: 0041 444 874 000 

Email: info@rheumaliga.ch 

Website: www.rheumaliga.ch 



President: Franz Stämpfli 

Treasurer: Kurth Birri 


Secretary: Valerie Krafft 


Name: Valérie Krafft 

Email: v.krafft@rheumaliga.ch 

Tel: 0041 444 874 000 


There is a youth organisation comprising 10–50 members 

15-40 years old, offering social activities, lectures and 

coaching 

Name: Martina Roffler 

Email: m.roffler@rheumaliga.ch 

Tel: 0041 444 874 000 

Website: www.jungemitrheuma.ch 


CONTENTS 

rlS was founded in 1958. 







• Provide help remedies 

• Provide information for patients and medical staff 


organisation are the following: Arthritis (juvenile 

arthritis, rheumatoid arthritis, etc.) low back pain, 

osteoarthritis, osteoporosis and soft tissue RMDs. 

The organisation has regional and local branches 

and it is built on a federal basis. The organisation 

is run by 20 paid members of staff. In total 

the organisation is comprised of 20 regional 

member leagues and 6 national disease specific 

organisations. 



• To develop projects regarding prevention of RMDs 

• Long term awareness campaign to reinforce self 

insurance of people with RMDs 

• To assure long term financing 

37

38 


of ParE 

organisations 

2013 

Türkye Romatizma Dernegi 

Turkish Rheumatism Society 


Street: No. 101 K. 7 yason /s. Merkezi 

City/Town: Istanbul 

ZIP/Postal Code: 80600 

Country: Turkey 

Tel: 0090 212 247 504 7 

Email: ndilsen@yahoo.com.tr 



President: Prof. Guzin Dilsen 

Treasurer: Banu Ergezen 


Secretary: Prof. Nihat Dilsen 


Name: Prof. Nihat Dilsen 

Email: ndilsen@yahoo.com.tr 

Tel: 0090 212 247 504 7 


CONTENTS 

Türkiye romatizma Dernegi was 


The organisation is run by the Executive Committee 

which is composed of 5 members: 

President, Vice-President, Secretary, Treasurer 

and a board member. 

Membership is open to: 

Physicians, health professionals, people with 

Rheumatic and Musculoskeletal diseases (RMD). 

The Main aims of the Society are: 

• To participate in the activities of and cooperate 

with EULAR and the PARE organisations. 

• Participate in worldwide activities to raise 

awareness about RMDs 

• Raise awareness about RMDs in Turkey 

• To give advice and help to the people with RMDs 

in different ways 



of ParE 

organisations 

2013 

ARMA - Arthritis and 

Musculoskeletal Alliance 


Street: Bride House, 18-20 Bride lane 

City/Town: london 

ZIP/Postal Code: EC4Y 8EE 

Country: united Kingdom 

Tel: 0044 207 842 091 0 

Email: info@arma.uk.net 

Website: www.arma.uk.net 



President: David Marsh 

Treasurer: Steve Holloway 


Secretary: Federico Moscogiuri 


Name: Sarah Wright 

Email: projects@arma.uk.net 

Tel: 0044 207 842 091 0 


There is an independent youth organisation comprising up 

to ten members. Several member organisations work with 

young people with arthritis and their families, with a very 

wide range of activities 

Name: Sarah Wright 

Email: projects@arma.uk.net 

Tel: 0044 207 842 091 0 

Website: There are several, please contact 

Sarah W. (above) for more detailed 

information 


CONTENTS 

arMa is the umbrella body providing 

a collective voice for the arthritis and 

musculoskeletal community in the uK 

and was founded in 1972. 


• Help shape policy 

• Contribute to the transformation of service delivery 

• Bring about improvements in the treatment of 

people with rheumatic and musculoskeletal 

diseases (RMDs) 

We have 40 member organisations, ranging from 

specialised support groups for rare diseases to major 

research charities and national professional bodies. 

ARMA’s vision is of an effective, unified 

musculoskeletal community working together to 

improve the lives of people with musculoskeletal 

disorders (MSDs). 

ARMA strives to transform the quality of life of people 

with musculoskeletal disorders. This is achieved by 

shaping policy and best practice in partnership with 

its member organisations. 

For more information, visit www.arma.uk.net 

39

40 


of ParE 

organisations 

2013 

ASIF c/o Ankylosing 

Spondylitis Association 

of Ireland 


Street: Carmichael Centre, 

North Brunswick Street 

City/Town: Dublin 7 


Country: Ireland 

Tel: 0090 212 247 504 7 

Email: info@ankylosing-spondylitis.ie 

Website: www.asif.info 



President: Mr. Seoirse Smith (Ireland) 

Treasurer: Mr. Rene Braem (Switzerland) 


Secretary: Mr. Michale Mallinson (Canada) 


Name: Ms. Debbie Cook (UK) 

Email: director@nass.co.uk 


The organisation was founded 1988. 

There are 34 member organisations. 

CONTENTS 

Organisations co-opted to the 

EULAR Standing Committe of PARE 

Membership is open to organisations with a shared 

interest and objectives in supporting people living 

with Ankylosing Spondylitis and related conditions. 

Our most recent achievements are the increasing 

number of national organisations who have joined 

with us. 

The biggest challenges for us in the years ahead are 

to improve the diagnostic delay in people with AS, to 

increase awareness of the condition.


of ParE 

organisations 

2013 

Federation of European 

Scleroderma Associations 

aisbl. - FESCA 


Street: FESCa aisbl le Versailles 

20/32 avenue des Etats unis 

City/Town: Tournai 



Website: www.fesca-scleroderma.eu 



President: Ann Tyrrell Kennedy 

Treasurer: Despo Charalambous Demetriou 


Secretary: Catherine van den Bosch & 

Alexandra Portales 


Name: Ann Tyrrell Kenned 

Email: anntkennedy@gmail.com 

Tel: 0035 312 846 080 


FESCa aisbl. was founded in June, 2007 

FESCA aisbl. has currently 23 member organizations 

from 18 countries, and two countries applying for 

membership 

Membership in FESCA aisbl. is open to any national 

organization that offers support to those who have 

scleroderma. Such an organization can also provide 

support to those with mixed connective tissue disease, 

Raynaud’s, or lupus. No more than .two organizations 

can join from any one country. 

CONTENTS 

Organisations co-opted to the 

EULAR Standing Committe of PARE 

Aims and objectives of the organization are: 

• To achieve earlier diagnosis and better treatments 

• To create greater awareness of scleroderma 

• To develop parity of care and treatment throughout 

the EU 

• To do this, FESCA aisbl. facilitates collaboration 

among national associations to share ideas and 

projects, and works towards the evolution of a 

– political, 

– social, and 

– medical environment 

that facilitates the achievement of the FESCA aisbl. vision. 

Our recent achievements have been: 

• To create and develop World Scleroderma Day, with 

global use of an iconic painting by Paul Klee, on June 

29, the day on which Paul Klee died of scleroderma 

• To develop a World Systemic Sclerosis Congress 

• To develop a biennial mid-career-rheumatologists’ 

training course in SSc 

• To more than triple the number of organizations that 

are members of FESCA aisbl, since its founding in 

2007 

• To develop in a very short time an identity that is 

recognized throughout the world as representative of 

patients, and is respected as the voice of patients in 

Europe 

• To apply for and be established as one of 14 partners 

in an EC 7th Framework Programme For Research 

And Technological Development, the biggest project 

ever sponsored by the European Union for systemic 

sclerosis, “The DeSScipher Project”. 

• To participate in numerous research programmes 

to ameliorate care of scleroderma patients, such as 

SPIN, EUSHNET, BURQUOL-RD, etc. 

The biggest challenges in the coming years will be: 

• To establish sufficient funding to support research into 

new treatments 

• To establish parity of care in Europe 

• To reach every scleroderma sufferer in Europe 

• To run a successful World Scleroderma Congress that 

is open to patients from around the world. 

Is there a youth group or organisation for youth? NO, 

although some national organisations (e.g. RSA in the 

UK) do have programmes for young people. 

41

Lupus Europe 

42 



of ParE 

organisations 

2013 

Street: St. James House, Eastern Road 

City/Town: Romford 

ZIP/Postal Code: RM1 3NH 

Country: UK 

Tel: 0045 214 060 05 

Email: chair@lupus-europe.org 

Website: www.lupus-europe.org 



President: Chair Kirsten Lerstrøm 

Treasurer: Alain Cornet 


Secretary: Anne Charlet 


Name: Kirsten Lerstrøm 

Email: kirsten@lerstrom.dk 

Tel: 0045 214 060 05 


The organisation was founded 1989 

There are 25 member organisations. Membership is 

open to European national groups for lupus patients 

Aims and objectives of the organisation are: 

• Our mission is to be the voice of lupus in Europe 

and empower the national organisations for people 

living with lupus. 

CONTENTS 

Organisation related to the EULAR 

Standing Committe of PARE 

The strategic drivers are: 

• to be recognized as voice of preference in the 

European dialogue between people with lupus and 

other key players 

• to have ensured strength and empowerment to 

national lupus groups in their operations 

• to encourage people with lupus to become actively 

involved in body or mind in research 

Our recent achievements were: 

• A new team for the board of Trustees was elected 

in November 2012. A strategic plan for the coming 

five year period has been drafted to be approved at 

council in November 2013. 

• LUPUS EUROPE will be participating in the main 

events of International Congress of SLE in Buenos 

Aires, April, and EULAR in Madrid, June as well as 

taking part in organizing the EuroLupusMeeting in 

Athens, 2014. 

The most important topics in the coming years will be/ 

the biggest challenges in the coming years will be: 

• With our projects Living with Lupus, Unmasking 

Lupus and MyLupus we aim to help provide new 

understanding of the disease and suggestions as 

how disease management and treatment could be 

developed to improve living with lupus in Europe. 

• With our involvement and close collaboration 

with lupus experts, industry and peer patient 

organisations we hope to qualify the clinical setting 

as well as improving the general awareness of 

disease burden. 

Activities of national member organisations include: 

Meetings (large and small, local, regional and national), 

patient education, awareness campaigns, help line 

and advocacy work.

directory - EULAR

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