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A European Parlia-ment interest groupon rheumatic dis-eases was launchedon 13 October in Brussels to mark WorldArthritis Day (WAD).

EULAR’s Charter for Work and the WADtheme of Let’s Work Together encourageddiscussions that led to the founding of the in-terest group. The Let’s Work Together themeencourages decision-makers to look at thechallenges of paid and voluntary work, es-pecially in a time of economic downturn.

An online survey for WAD was releasedon 12 October. It looked at how people withrheumatic diseases are treated at work. Thesurvey had three separate questionnaires –one for people with arthritis, one for em-ployers and one for healthcare profession-als. Over 3,300 people from more than 78countries filled in the survey. The resultsclearly show there is a need to raiseawareness, among both employees withrheumatic diseases and their employers, ofthe challenges faced in the workplace.Greater awareness can make it easier forpeople to get suitable jobs and to securegovernment assistance and legislation for more adaptable and flexible working environments.

Inspirational examples of the value ofwork for people with rheumatic diseaseswere given through the Working Wondersexhibition. This was hosted by Jim HigginsMEP and held at the European Parliamenton 13-16 October. The Working Wonders ex-hibition was based on the online EULARphoto competition Picture This, whichshowed the experiences people with rheu-matic diseases have at work. FrançoisDessy, a veterinary doctor from Belgium,was the winner of the online competition.An exhibition of 14 of the best photos is

travelling around Europe. The exhibitionwas displayed at the 12th EULAR AutumnConference of PARE (5-8 November) inTallinn, Estonia. The contents were chosenby a panel including Dame Carol Black (UK),Jim Higgins MEP (Ireland) and Professor Say-eed Khan, Chief Medical Adviser of the Engi-neering Employers Forum (UK).

EULAR was delighted to welcome the Eu-ropean Health Commissioner, AndroullaVassiliou, to the Working Wonders exhibi-tion. Professor Paul Emery, EULAR President,stressed the importance of raising aware-ness of rheumatic diseases. This would help diagnose people in the early stages of thedisease when appropriate treatment couldprevent disability for many people. Com-missioner Vassiliou said: ‘I welcome theefforts of the European Parliament toensure that people with rheumatic diseasesbenefit from the best practices available inthe EU.’ For more information on these

events, the Let’s Work Together survey, theWorking Wonders exhibition, and thecountry-level celebrations of WAD aroundEurope please see www.worldarthritis-day.org and www.eular.org. ■

BREAKTHROUGHNews from the Standing Committee of People with Arthritis/Rheumatism in Europe

ISSUE 4 WINTER 2009

Special interest group launchedin the European Parliament

PAGE 2: Inside EULAR

PAGE 3: News from Europe

PAGE 4: Interview with EULAR Vice President

PAGE 5: Edgar Stene Prize 2010

PAGE 6: EULAR Autumn Conference

PAGE 7: Country news

PAGE 8: Spotlight on partner organisations

ISSUE 4 CONTENTS

Commissioner Vassiliou (centre) is guided through the exhibition by EULAR President Paul Emery(left), Nele Caeyers (far left), Kåre Birger Hagen (right) and Marios Kouloumas (far right)

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The EULAR Standing Committee onEpidemiology and HealthServices ResearchBy Professor Angela Zink, Chairperson

Inside EULAR

This is my first editorial as Chair of the EULAR Standing Committee of PARE.

I am very honoured to be leading the Standing Committee forthe next two years and I look forward to working closely with NeilBetteridge, EULAR Vice President representing national organi-sations of people with arthritis/rheumatism. I am delighted thatthere are some exciting developments in the first months of myterm of office, such as the activities around World Arthritis Dayin the European Parliament.

The launch of the European Parliament interest group on

rheumatic and musculoskeletal diseases, together with the EULARexhibition Working Wonders, were very successful.

In 2010 we will continue our dialogue with European key stake-holders and work closely together to improve the quality of life of more than 100 million people with rheumatic diseases in Europe.

We would like to thank you for your commitment, support andcontribution to our projects, and we wish all our readers a happyand healthy 2010.Marios Kouloumas is the Chair of the Standing Committee of PARE

DEAR COLLEAGUES by Marios Kouloumas

The aims of the StandingCommittee of Epidemiologyand Health Services Re-search are to gather thebest available epidemiologicevidence on rheumatic dis-eases, to standardise andvalidate methods for re-search, and to actively stim-ulate research in fieldsconsidered relevant forEULAR.

This is done in close collaboration with other EULAR StandingCommittees, especially the one for Clinical Affairs and with PARE.We have four current activities.

• American College of Rheumatology (ACR)/EULAR Taskforces.The new criteria for diagnosing rheumatoid arthritis are being val-idated and were presented at the ACR annual meeting in October2009. A second taskforce is identifying the need and scope for re-ferral guidelines for people with inflammatory polyarthritis.

• Database on the burden of rheumatic diseases and their man-agement. We are working closely with the EuMuscNet project andthe international World Bank Global Burden of Disease project toset up a database with the best available data on the occurrence,impact and availability of healthcare resources relevant to mus-culoskeletal disorders in different European countries.

• Taskforce on Biologics Registers in Rheumatology. The task-force has finalised a paper called ‘Points to consider when es-tablishing, analysing and presenting data from observational drugstudies’.

• Workshop on patient-reported outcomes in rheumatology re-search. In November 2009, a workshop with patients andrheumatology specialists discussed the need for EULAR’s in-volvement in the development and evaluation of patient-reportedoutcomes. ■

Three new members were elected to the PARE board in June2009 – Jacqueline Mäder (Switzerland), Morteza Abdeli (TheNetherlands) and Alison Kent (United Kingdom).

‘It was such a great feeling to be elected and I am very gladto use my skills for the work of PARE,’ said Jacqueline. ‘As asocial consultant I am always focused on the social impactof rheumatic diseases. This is my main perspective on proj-ects run by PARE.’

Morteza Abdeli has been on the board of the Dutch asso-ciation for young people with rheumatism since 2004. ‘I liketo help young people with rheumatism, because other peoplehave helped me,’ he said. ‘My main reason for wanting to jointhe PARE board was to represent the interests of youngpeople.’

Alison is a former rheumatology nurse and has used herpersonal insight as a person with rheumatoid arthritis to helpothers. ‘I was very fortunate to meet the members of the PAREboard,’ she said. ‘It was a fantastic opportunity and gave mea great insight into their work. Everyone was so welcomingand it was great to meet others all working towards the samegoals.’ The Standing Committee of PARE wishes the threenewly elected members a fruitful term of office. ■

PARE Internal News

New PARE board members: Morteza (first on the left at the top),Alison (in front of Morteza) and Jacqueline (front line in the middle)during the June PARE board meeting at EULAR House

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News from the heart of Europe

On 13 October 2009 a cross-party, pan-European interest group on rheumatic andmusculoskeletal diseases was launched atthe European Parliament in Brussels.

The group was set up by 20 MEPs toaddress the enormous social and economicburden these conditions place on society.More MEPs have since joined. The interestgroup will also raise awareness of rheumaticdiseases and look at what the EuropeanParliament and other EU institutions coulddo to ensure people with rheumatic dis-eases are better included in society.

At the launch of the interest group,Marios Kouloumas, Chair of the StandingCommittee of PARE, stressed the impor-tance of all parties working together toachieve full participation for people withrheumatic diseases in society.

The group is chaired by Edite EstrelaMEP (Portugal), with Jim Higgins MEP fromIreland as co-chair. On the same day, Jim

Higgins also launched the Working Wondersexhibition linked to the EULAR Work Charter.European Health Commissioner AndroullaVassiliou also expressed her support andenthusiasm for the interest group andWorking Wonders. The first meeting of theinterest group was planned for 3 December2009. ■

Edite Estrela MEP (Portugal), speaking at thelaunch event of the European Parliamentinterest group on rheumatic andmusculoskeletal diseases

A new study has found that musculoskeletal disorders (MSDs)account for nearly half (49 percent) of all absences from work and60 percent of permanent work incapacity in the European Union.

Based on this study by the Work Foundation, the Fit for Work campaign was launched on 30 September at the European Par-liament in Brussels by MEPs Edite Estrela (Portugal) and AntonyiaParvanova (Bulgaria). ‘Only co-ordinated action between govern-ments, business, the healthcare community and patients will allowthose living with MSDs to stay working, contribute to society andmaintain a good quality of life,’ said Edite Estrela MEP.

Antonyia Parvanova MEP added: ‘Once governments haveagreed that MSDs are a priority, they should set out nationalwelfare and public health plans addressing these conditions.’

The full socio-economic cost of MSDs in Europe is estimatedto be €240 billion. The study was conducted across 25 Europeancountries by The Work Foundation and found that 100 million Eu-ropeans have chronic musculoskeletal pain with up to 40 percenthaving to give up work due to their condition.

‘As Europe now struggles to emerge from the global recession,policy-makers should look at how labour productivity in busi-nesses is being undermined by these painful conditions,’ saidStephen Bevan, managing director of The Work Foundation.

For more information, visit www.fitforworkeurope.eu or, alternatively, contact Jenny Taylor on +44 20 7976 3519 or jtaylor@theworkfoundation.com ■

Fit for Work campaign launch

European Parliament interestgroup on rheumatic diseasesBy Laura Jakovljevic, Eacon

By the Work Foundation

Health topic forEU PresidencyEvery European country that hosts therotating European presidency selects ahealth topic and holds several confer-ences about it. EULAR has been inclose contact with the Belgian author-ities for the past year on the setting ofthe Belgian presidency health agenda.EULAR met with the Belgian authoritiesover the summer to discuss a part-nership for one of the major confer-ences. Discussions are still ongoingwith the Belgian diplomacy office andthe final decision should be an-nounced by the end of the year.

Stephen Bevan, managing director of The Work Foundation (UK),launching the Fit for Work campaign at the European Parliament

Interview

4 < Breakthrough

Neil Betteridge (NB) developed juvenilearthritis when he was three-years-old. Longbefore he knew of phrases such as wheel-chair accessible, he was facing disablingfeatures like inaccessible transport andschool buildings. Lucky enough to have recuperated well in his adult life, he wasable to find a profession in which he couldaddress some of the issues he encounteredin his childhood.

Currently the chief executive of ArthritisCare, Neil was closely involved in creatingthe first disability legislation in the UK (Dis-ability Discrimination Act 1995). He chairedthe UK Government’s Disabled PersonsTransport Advisory Committee, and is stilla Patient and Public Adviser to the De-partment of Health in England. From 2001to 2005, Neil was EULAR Vice Presidentrepresenting the patient organisations,the former Chair of the PARE Manifestoboard, and was also Chair of the UK na-tional representative in PARE – The Arthri-tis and Musculoskeletal Alliance (ARMA).He is now serving a second term as EULARVice President.

PARE: Your key EULAR positionis a huge commitment of time,energy and responsibility. Whatmade the current work of PAREso attractive that you decided tocome back? NB: For me, this is a phase twoproject. From 2001 to 2005 mypriority was to integrate PARE’sactivities into the overall work ofEULAR. My mantra was ‘nothingabout us without us’, meaning EULAR’s work is most effectivewhen the person/patient is at thecentre of it. I was lucky enoughto work alongside presidentssuch as Josef Smolen and Tore Kvien who completely recognised the value of greater collaboration, somethingwhich Professors Breedveld and Emery havecontinued to develop enthusiastically.

PARE: Which projects/activities wouldyou like to see being developed andstrengthened during the next four years?NB: Now that EULAR’s various stakeholdersare fully and positively committed to

partnership, we have new opportunities forpioneering work. For example, the modelof involving people with rheumatic dis-eases in all of EULAR’s work, including re-search and the production of guidelines, isa progressive model from which the wholeworld can learn. But there are challengesfor all parties too, and representatives fromPARE associations across Europe need sup-port. This includes support to develop and

implement models of effectivecollaboration (it can be very in-timidating to step up and workwith world renowned clinical ex-perts). Help with translationcosts is sometimes needed. Doc-tors have to learn English fortheir profession, but volunteerswith rheumatic disease associa-tions do not.

But it is on campaigning workwhere people with rheumatic diseasesmost need to lead. Politicians, journalistsand the general public always listen moreattentively to people who understand a par-ticular condition first-hand, than they do toprofessional bodies who can sometimes bedismissed as lobbying for their own pro-fessional interests. We have already seengreat partnership work within EULAR to per-suade the EU to do more for people with

Looking to the futureNeil Betteridge elected for second term as EULAR Vice President

Neil Betteridge. (Left) Speaking inthe European Parliament inBrussels at the 2005 AllianceAgainst Arthritis initiative, duringhis first term as EULAR VicePresident

Edgar Stene Prize

Breakthrough > 5

rheumatic diseases. In my view this increasein profile is set to rise dramatically over thenext few years. These are very exciting timesfor us.

PARE: Europe is currently facing a time ofhardship. Several PARE organisations arestruggling financially and people witharthritis might feel the consequences intheir daily lives. What activities areplanned to support the efforts on a na-tional level and to keep raising the profileof arthritis/rheumatism at the Europeanlevel?NB: We all face a hugely serious challengehere. Just when people with rheumatic dis-eases need support more than ever, publicand private funds are in much shorter sup-ply. Support is in danger of decreasing be-cause organisations are adversely affectedby the economic downturn. Fortunately, weknow that there is high-level political inter-est in the work agenda at the EU level.

EULAR can best support people bypushing even harder for support frompolicy-makers. The recent World Arthritis Day activities, at both national and pan-European levels, demonstrated how this canbe done effectively. Politicians know it isbetter if people who can work are sup-ported to do so. They would rather receivetax from people than spend money on ben-efits and additional health services. So wehave a huge opportunity to generate moresupport in this area which will help peoplewherever they live. However, we must beequally vigilant to ensure that those who dovoluntary work, housework, or those whocannot physically work, are not neglectedalong the way.

PARE: Looking four years ahead, what isyour vision for people with arthritis/rheumatism within EULAR?NB: I genuinely believe we will have such awell developed integration between healthprofessionals and people with rheumaticdiseases that the concept of collaborationwill not even be discussed, except to keepimproving it. I believe we will have a largegroup of well supported, passionate advo-cates of EULAR’s work who will add valueto the world class work which scientificmembers will doubtless continue to pro-vide, in a culture of mutual respect. To-wards the end of my term of office, I wouldlike to hear EULAR members from all fieldslaughing in amusement as they say: ‘re-member the time of the “nothing about uswithout us” campaign?’ I want them to beable to say: ‘how could we ever have livedwithout collaboration?’ ■

Edgar Stene Prize 2010What support would you have appreciated when you were looking for work? Whatcould have gone better? EULAR has launched the 2010 Edgar Stene Prize essay com-petition, under the theme ‘Working with a rheumatic disease – my daily reality.’ Wewould like to know about the positive experiences but also the daily challenges youwent through when finding a job and staying in work, or looking after your familyif you were not in paid employment. Entries should be sent to your national EULARmember organisation of people with arthritis/rheumatism by 31 January 2010. A na-tional jury will select the winning essay for your country. This should be receivedby the EULAR secretariat no later than 21 February 2010. The award will be presentedat the EULAR Congress 2010 in Rome. For competition rules and more details pleasevisit www.eular.org. ■

Spain and the CzechRepublic receive grantsEvery year, EULAR provides grants to PARE organisations for educational exchangevisits. The aim is for smaller groups to establish a fruitful mentoring relationship withanother organisation – known as a teaching organisation – within the PARE Euro-pean network. In 2009, grants were given to the Czech Republic and to Spain, whoseplans must be put into practice before the end of 2010.

The focus of the Czech Republic application is structural development, communicationand motivation strategies, as well as organisational growth. Germany will be the teachingorganisation. The Spanish project, developed with the Netherlands, covers campaigningmethodology, the development of patient support initiatives, and capacity building. A report on activities must be handed to EULAR by 30 November 2010.

The grants help smaller, less-developed patient groups supporting people with rheu-matic diseases, to develop their skills by working with other PARE members. Groupsthat participate in exchange visits are able to learn from groups who are open tosharing their knowledge, projects and materials.

The projects developed under the educational exchange programme mustdemonstrate immediate and long-term benefits for people with rheumatic diseasesin the organisation’s regional area of influence. People with rheumatic diseases mustbe actively involved in the development and application of projects. The PARE Stand-ing Committee would like to thank all organisations who applied this year.

The 2010 educational exchange visit programme is now open for applications. Allentries must be presented to EULAR by 30 April. Please visit www.eular.org for moreinformation. ■

Emmi Myöhänen, winner of Stene Prize 2009, receives her award at the opening ceremony ofthe 2009 EULAR Congress

[Top] Tallinn hosted the EULAR AutumnConference in 2009

[Left] The exhibition panel of the online photo competition winner – François Dessy from Belgium

The focus for the 2009EULAR Autumn Confer-ence for PARE was onworking with employers.

The conference on 5-8November helped EULARnational organisations of PARE to collabo-rate better with employers’ organisationsand individual employers. Su Wang, grouphead of health at Royal Mail, one ofBritain’s largest employers, informed dele-gates about RehabWorks, a highly suc-cessful programme for helping people withmusculoskeletal conditions return to work.At the end of her presentation Dr Wang in-troduced the idea of European minimumstandards of work for people with rheumaticdiseases, which delegates then developedin a workshop. Presentations on legislationand work adaptations were given by ZintaPodniece from the European Agency forSafety and Health at Work, and PeterOesch, head of ergonomics at the ValensRehabilitation Centre in Switzerland. Thesewere followed by workshops to help dele-gates build a business case for employingpeople with rheumatic diseases.

John McGregor from Arthritis Care (UK)presented his highly successful Preparing 4Work training programme, which has alsobeen adopted in Switzerland. In a followingworkshop, delegates discussed materials tosupport people with rheumatic diseases togain employment. A tool kit with the sup-port materials will be available for nationaladaptation and translation in 2010.

Other highlights of the conference werethe Working Wonders exhibition, shown forthe first time. It raised a lot of interest andwill travel through Europe in the comingmonths. François Dessy from Belgium, thewinner of the Picture This competition, wasawarded his prize at the opening of the conference. François’ winning entry will beincluded in the exhibition.

There was a poster session which allowedcountries to showcase their 2009 projectsand campaigns. It stimulated many fruitfuldiscussions. The Share Fair sessions provid-ed national organisations with the opportu-nity to share and learn from best practiceand how to benefit from the EULAR educa-tional visit programme in the future. ■

12th EULAR Autumn Conference for PARE

EULAR Autumn conference

6 < Breakthrough

2010 EULARCongress in Rome Rome is going tobe a busy city in2010 – and weare not talkingabout the traffic.The EULAR Con-gress in 2010will present thelatest scientificdiscoveries andoffer many new themes on which toreflect. The PARE programme willfeature several themes for discussionand participation. These will include di-versity – engaging with all sections ofsociety, and balance between work andleisure. Other sessions in the pro-gramme will look into the latest de-velopments in the political area, how toimprove marketing around rheumaticdiseases, patient participation in re-search, and informed decision making.Please visit www.eular.org for more information. ■

Country news

Breakthrough > 7

Having arthritis/rheumatism changes youreveryday life. Coping with pain and restrict-ed movement take away vital energy andaffect all areas of your life. Arthritis/rheuma-tism is usually invisible to other people.Through its services, the Swiss Rheumaligais committed to those with rheumatism andprovides the following support. • Information: this is provided through a variety of publications and the websitewww.rheumaliga.ch• Advice: is provided on all matters relat-ing to rheumatism by telephone, email andface to face.• Rheumaliga courses: these are attendedby more than 25,000 people every year.Courses include back training, a specialform of gymnastics for people with osteo-porosis, water-based fitness training, spe-cialised weekend seminars, workshops forfamilies with a child with rheumatism, andpatient training workshops.• Further training for specialists: trainingsessions for course-leaders and family doctors are held regularly.• Self-help group work: great emphasis isgiven to self-help group work in all regionsof Switzerland.

• Everyday life assistance: life withrheumatism often involves pain and a lackof strength and mobility. We provide infor-mation to help people to simplify day-to-day living. • Publications: we make the public, themedia and politicians more aware of the re-quirements of people with rheumatismthrough media work and publicity.• Social and health-policy commitment: ona political level, Rheumaliga Schweiz is com-mitted to a better quality of life, and betterprovision and support for people withrheumatism. ■

Rheumaliga is here to helpBy Rheumaliga Schweiz

The Croatian LeagueAgainst Rheumatism is anon-profit associationfounded in 1992 inVaraždinske Toplice. It was formerly knownas the Association of Rheumatic Patients inZagreb. The basic activity of the League isto provide ongoing education to members,through a number of popular lectures andsocial activities across the Republic of Croa-tia. People can obtain information abouttheir condition and receive advice on treat-ment and self-management.

The League has 12 regional branchesacross the country with more than 3,600members. Our main office is at the de-partment of rheumatology, physical medi-cine and rehabilitation at the Sisters ofCharity hospital in Zagreb. The referralcentre for spondyloarthropathies is basedat the Croatian Ministry of Health andSocial Welfare. The League has four com-

mittees: economic and promotional activ-ities; legal services; publishing activities;and social and humanitarian activities.

Our future plans include a more activeparticipation in international meetings andconferences, and the national implemen-tation of the EULAR Charter for Work. Wealso want to establish links with otherpatient organisations in Croatia and other

countries. The official website of the Leagueis www.reuma.hr. It has some of our verypopular booklets with important informa-tion that is designed and written for peoplewith specific rheumatic diseases (rheuma-toid arthritis, ankylosing spondylitis, painfulshoulder, and many others). The CroatianLeague Against Rheumatism also pub-lishes a magazine, Reuma. ■

An overview of the Croatian League Against RheumatismBy Frane Grubisic, Secretary General of the Croatian League Against Rheumatism

The Croatian League contributes to the education of their members through lectures and other initiatives

Rheumaliga Schweizprovides a gymcourse for peoplewith osteoporosisand information andsupport to itsmembers

8 < Breakthrough

EULAR supports the BJD: www.boneandjointdecade.org

EULAR Secretariat

Birte Glüsing (Project Manager) & Florian Klett (Project Co-ordinator), Seestraße 240, 8802 Kilchberg, Switzerland

Tel: +49 (0)228 9621283 and +41 (0) 44 716 3035, Fax: +41 (0) 44 716 3039

Email: Birte.Gluesing@eular.org and Florian.Klett@eular.org Website: www.eular.org

Spotlight on partner organisations

BREAKTHROUGHEULAR Vice President

Neil BetteridgePARE Standing Committee

ChairpersonMarios KouloumasEULAR Secretariat

Birte GlüsingFlorian Klett

EditorAndrew Harding, Arthritis Care

Newsletter Co-ordinatorSandra Canadelo

Graphic DesignerMartin Stanley, Arthritis Care

Print ProductionChris Hogg, Publications Department,

Arthritis CarePublisher

EULAR Standing Committee of Peoplewith Arthritis/Rheumatism in Europe

Number of copies: 1,700 The Standing Committee of PARE would

like to thank all those who havecontributed to this newsletter.

For over 20 years, the European Lupus Erythematosus Federa-tion (ELEF) helped to link all people with lupus across Europe.Since September 2008, the group has worked under the nameof Lupus Europe.

The vision of Lupus Europe is that all people with lupus through-out Europe are given the support they need to live a comfortablelife. Lupus Europe wants to raise awareness of lupus and theimpact it has on the lives of people living with the illness. Our newwebsite is expected to be online by the beginning of December.

On World Lupus Day on 10 May each year, many countries organise activities to help make our voices heard. During otheroccasions such as the EULAR Congress, the International Con-gress on systemic lupus erythematosus (SLE) or other patient-centred gatherings, Lupus Europe’s presence gains a lot ofattention for this sometimes overlooked condition. The organ-isation has an annual convention in September, where delegatesfrom the 22 member organisations meet and share experiences.Topics such as fundraising, medical updates and awareness, wereon the agenda in Strasbourg in September 2009.

The majority of the board of Lupus Europe are lupus patientsthemselves. In this way the organisation is a real user-led group.A medical advisor supports the team when medical issues arise.One of the highlights for 2010 will be the ninth International Con-gress on SLE in Vancouver in June. ■

Scleroderma Awareness Day on 29 June wascreated by the members of FESCA to tellpeople what it means to have this disablingdisease. On this day, we celebrated thegifted Swiss artist Paul Klee and all othersstruggling with scleroderma. We campaign for a world in whichsuch rare diseases are not forgotten – and demand equal treat-ment and care across Europe.

The day was designated throughout Europe to recognise thebravery of those who live with scleroderma. Twelve FESCA coun-tries held celebrations with very positive feedback. Despite fi-nancial shortages, national conferences were organised for eitherpatients or doctors in Belgium, The Netherlands, France,Hungary, Cyprus, and Portugal.Press conferences and adver-tising campaigns were held inBelgium, Italy, Hungary, Spain,Ireland, UK, and Cyprus, in-cluding a 30-second TV commercial in France, run onfive channels.

In Spain, a decorated vandrove around cities to give outinformation, and there was asubway poster campaign. InIreland, the Minister of Healthlaunched Scleroderma Aware-ness Day simultaneously withthe very early diagnosis of sys-temic sclerosis (VEDOSS)project. In Italy, informationtents were set up in cities. Anidentical poster and leafletshowing a Klee painting wasused in all EU campaigns andtranslated into national lan-guages. The first awarenessday was a huge success. ■

The role of Lupus EuropeBy Lupus Europe

Celebrating SclerodermaDay across EuropeBy the Federation of European SclerodermaAssociations (FESCA)

The board of Lupus Europe

European activities on SclerodermaAwareness Day included a mobileinformation unit in Spain and thelaunch of the VEDOSS project by theMinister of Health in Ireland