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This year, the host city ofthe European Congress ofRheumatology will bebeautiful Paris, which willwelcome around 13,000delegates on 11-14 June tothe Palais des Congrès.The Standing Committee ofPeople with Arthritis/Rheumatism in Europe(PARE) has a full and ex-citing programme to offerto more than 200 dele-gates representing the national organisations ofpeople with arthritis fromall over Europe.

‘Although our programme reflects therelevant topics and needs of our memberorganisations and not the latest researchresults, we would very much like to en-courage and welcome doctors to our

sessions as well. Webelieve that many of ourpractical and day-to-daythemes, such as Arthritisand pregnancy or Buildingpatient-led advocacygroups, could be very insightful and help improve the patient-doctorrelationship,’ explainedMaarten de Wit, EULARVice President, represent-ing national organisationsof people with arthritis/rheumatism. Maarten de-veloped the programme in

close consultation with members.As in previous years, the programme in-

cludes the very popular joint sessions withallied health professionals and scientificsocieties as well as the highlight session2008 on Saturday, summarising the con-gress programme in lay language.

Please find a detailed overview of theprogramme on page 4 of this newsletter.PARE will also hold a poster session duringthe congress featuring a selection of in-teresting activities from member organisa-tions. Come and see our work in the posterarea near the EULAR booth – a great op-portunity to share experiences and a sourcefor inspiration.

We would also like to welcome you atthe EULAR booth. There will be a displayof the activities of the Standing Commit-tee of People with Arthritis/Rheumatism inEurope. You will be invited to fill in theWorld Arthritis Day 2008 online survey andbe one of the first to see the new seriesof the Think Positive video diaries. ■

The Belgian bikers team at the finish line inBarcelona 2007

EULAR set tosparkle in Paris

Make theWheel Turnto Paris

PAGE 2: Inside EULAR

PAGE 3: News from Europe

PAGE 4: EULAR congress

PAGE 5: World Arthritis Day

PAGE 6: EULAR Autumn conference

PAGE 7: Country news

PAGE 8: Spotlight on our partnerorganisations

ISSUE 1 CONTENTS

From Brussels to Paris by bike – the Makethe Wheel Turn project will for the fourthtime be active this year, counting on anastounding number of more than 100 par-ticipants. An initiative by the Royal BelgianSociety of Rheumatology and the Belgianuser organisations, CLAIR and ReumaNet,this project was developed to serve as ameans of creating awareness and mobil-ising people. The journey in tandem is asymbol of solidarity between physicians,paramedics and patients with chronic in-flammatory rheumatism. Successful man-agement of these chronic diseases is morelikely when you search together for thebest solutions. Please be there to welcomethe tour when they arrive at the Palais desCongrès on Wednesday 11 June 2008 at 14.00. ■

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

ISSUE 1 SUMMER 2008

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Education is very important for EULAR. Dueto the different standards of care appliedacross Europe, the existing educational activities did not meet the learning needs of the Allied Health Professionals in Rheumatology (AHPR).

We also discovered a need for a post-qualification programme on the diagno-sis and treatment of rheumatoid arthritis(RA) and osteoarthritis (OA), developedand delivered by AHPs. Therefore wedecided to run a course focusing on stateof the art diagnosis and treatment of pa-tients with RA and OA, as well as on ways

to spread this knowledge at a nationallevel. Good trainers are crucial for thedissemination of knowledge generatedwithin EULAR, so a Teach-the-Teacherelement was included.

Each participating team consisted ofa nurse, a physiotherapist and an occu-pational therapist, from 15 different Eu-ropean countries. The course took placeon 15-18 May 2008 at Leiden UniversityMedical Centre, The Netherlands. Theteachers were EULAR Executive/ScientificCommittee or AHP Scientific/EducationCommittee members. ■

EULAR allied health professionals organise first Teach-the-Teacher CourseBy John Verhoef, EULAR Standing Committee of Allied Health Professionals

John Verhoef (left) and Peter Oesch, Chair and Vice President of the Allied Health

Professionals. Photo by U Palonen-Tikkanen

Inside EULAR

‘Strength does not come from physical capacity. It comes froman indomitable will,’ in Ghandi’s words. It is nothing that we,people with arthritis/rheumatism, are unaware of. But as istrue for many areas of life, we cannot achieve everything on our own – partnerships are crucial and a key element for success.

This was also the main thinking behind the restructuringprocess that integrated PARE Manifesto fully into EULAR. TheEULAR Standing Committee of PARE has now taken over torepresent the more than 100 million people affected by arthri-tis/rheumatism in Europe. The EULAR Congress is one of themost important events in our yearly activities and the ideal

platform for our partnership with allied health professionalsand scientists. Have a look inside this newsletter to find outmore about the programme and activities. We aim to con-tinue our important work in this powerful structure and usethe synergies of the other partners within the organisationto grow. We look forward to this new era and would like tothank you for all your support in the past, and count on youto continue helping us to make a difference for all peoplewith arthritis/rheumatism in Europe.

We hope to see many of you in Paris – à bientôt.

Sandra Canadelo is the Chair of the Standing Committee of PARE

DEAR COLLEAGUES by Sandra Canadelo

Sandra Canadelo, current Chair of theStanding Committee of PARE, will end herterm of office at the EULAR congress in2009. To ensure continuity, the PARE boardmeeting in Brussels in March took the op-portunity to discuss the situation. SandraCanadelo nominated Marios Kouloumas,President of the Cyprus League AgainstRheumatism and member of the boardsince January, as her successor.

The Board welcomed this suggestion

and agreed to Marios’ nomination.Maarten de Wit, EULAR Vice President ofnational organisations representing peoplewith arthritis/ rheumatism, said: ‘WithMarios we have found a highly experi-enced and committed successor, and I amdelighted that he has accepted the vote.’His nomination will be officially presentedto the Standing Committee of PARE forratification at their next meeting in Paris.Marios Kouloumas will start his term of

office as Future Chair in June 2008. Marios commented: ‘It is a great honourto follow Sandra in this position and torepresent the needs of organisations ofpeople with arthritis/ rheumatism at the European level. I would like to thankall who have given me their trust andensure you that I will do my best to con-tinue the great work and achievementsfor people with arthritis/rheumatism inEurope.’ ■

Securing the futureFuture Chair of Standing Committee of PARE has been nominated

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News from the heart of Europe

Brussels Declaration EULAR calls for more recognition and enforcement of the rights of people with arthritis in Europe

Although the past 10 years have seensignificant improvements in the man-agement of rheumatoid arthritis (RA), ashortfall still remains between the careavailable, and the treatment patients actually receive. In addition, there aresubstantial geographical dif ferencesacross Europe in the care people with RAcan access.

The 5th Alliance Against Arthritis daygathered EULAR’s key stakeholders on4-5 March in Brussels. EULAR launchedthe Brussels Declaration, which calls onthe European Union and its MemberStates to recognise and enforce therights of people with arthritis in the EU.

EULAR asked policy makers in the Eu-ropean Union to become fully aware ofthe needs of people with arthritis andguarantee access to adequate care forall Europeans with rheumatic diseases.Professor Josef Smolen, member of theEULAR Executive Committee responsiblefor European Affairs, said: ‘Many Euro-pean decision makers still tend toneglect the enormous burden rheumaticdiseases represent for society, althoughindirect costs generated through earlyretirement and sick leave are endanger-ing Europe’s economic competitiveness.The Brussels Declaration is a clear callfor action. It is time for Europe torespond now.’ Please visit www.eular.orgfor more information.

There was a very well-attended lunch

debate Is the EU prepared to addressthe challenge of chronic diseases? withstatements from several European Com-mission representatives and a lively dis-cussion. Other activities includedface-to-face meetings with key stake-holders, a press breakfast and the in-auguration of EULAR’s EU-office inBrussels. This had been a long-time goalof EULAR to develop long-term relation-ships with decision-makers and stake-holders at the EU level, as well as tointensify the contact with EU institutions.

EULAR also initiated a workshop,gathering experts in order to develop aspecific project to address the lack ofcomparable and available data on mus-culoskeletal conditions in Europe. Thisproject should be implemented with the support of the EU’s Public Health Programme. ■

Left: The EULARlunch debateengaged theparticipants in lively discussions

Below: Josef Smolen,team leader for theEULAR EU AffairsGroup, defends theneed for Europe torespond to the needs of people with arthritis

The European Health Forum Gastein is anannual event in the field of European healthpolicy. It is a platform for European key stake-holders, representing their ministries and otherauthorities in the EU member states and theWHO European region, to discuss their viewsand experiences.

Besides politicians, it brings together senior decision-makers,representatives of interest groups, as well as experts comingfrom government and administration, business and industry,civil society and science and academia.

The agenda for 2008 features a forumabout the very important topic of rare dis-eases and orphan drugs as well as manyother relevant themes. As in previous years,EULAR will be represented by a delegationon 1-4 October 2008.

Prior to this event, the Standing Com-mittee of PARE will hold its third board meeting in the lovelyvillage of Bad Hofgastein. We would like to warmly thank thedirector of the Gasteiner Heilstollen, Dr Christoph Köstinger,and his whole team for kindly supporting our meeting again.

11th European Health Forum GasteinValues in health – from visions to reality

DAY 3 – FRIDAY 13 JUNE

Time Room Session/Theme

10.15-11.45 243 Working in partnership with industry: finding a healthy match

13.30-15.00 242AB Joint session: pregnancy andarthritis healthcare

15.30-17.00 242AB Joint session: patient partnerships – could we do better?

Overview EULAR congressprogramme for PARE

What’s on and where...

EULAR congress

The Palais desCongrès Paris (above)

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DAY 1 – WEDNESDAY 11 JUNE

Time Room Session/Theme10.45-12.30 EULAR General Assembly13.00-14.30 243 Building patient-led advocacy

groups: challenges and pitfalls15.00-16.30 243 A matter of facts and figures:

filling in the gaps17.00-18.30 243 Standing Committee of

PARE meeting18.45-20.00 Opening ceremony20.15-22.00 Welcome reception

DAY 4 – SATURDAY 14 JUNETime Room Session/Theme10.00-11.30 243 Patient participation in the

development of guidelines: a workshop (part 1)

11.45-13.15 243 Patient participation in thedevelopment of guidelines: a workshop (part 2)

13.30-14.30 243 PARE highlight session by GabiUdrea and Gabriella Constantin

15.00 Farewell drink at the Palais des Congrès

DAY 2 – THURSDAY 12 JUNE

Time Room Session/Theme

10.15-11.45 243 Innovations in patienteducation: who is responsible?

13.30-15.00 242AB Joint session: innovative modelsof delivering care

15.30-17.00 242AB Joint session: what is quality of life and how to measure it. A team perspective

18.00-22.00 PARE social evening

World Arthritis Day

Most people are aware thatarthritis/rheumatism pres-ents a number of physicalproblems, but the psycho-logical challenges faced bypeople with arthritis/rheumatism are often over-looked. We hope we canhelp address this issue with this year’sWorld Arthritis Day (WAD) theme of ThinkPositive.

Our call to action is to ensure thatpeople with arthritis/rheumatism are offeredpsychological support, as well as treatmentfor their physical symptoms. We also want to learn from people with arthritis/rheumatism what they do to helpthemselves when they are feeling low, sowe can share this with others in similar sit-uations. To find out more about the psy-chological challenges and coping

strategies of people witharthritis/rheumatism we arerunning a Think Positiveonline survey on the WADwebsite. Please encouragepeople with arthritis/rheumatism and doctors inyour country to complete

the survey questionnaire – our aim is tohave 50-100 completed questionnairesfrom each country. The World Arthritis Daysurvey is supported by an educationalgrant from Pfizer.

What activities are you planning on World Arthritis Day? We would like to hear about your events and add themto the website. Thank you for helping usto make World Arthritis Day bigger andbrighter in 2008.

Visit the World Arthritis Day website atwww.worldarthritisday.org ■

Following the success of Arthritis Care’s videodiaries project, Portugal is going to produceeight stories of its own

Think positive onWorld Arthritis Day

Video diariesbeing filmedin PortugalBy Sandra Canadelo, LPCDRThe clear success of Arthritis Care’s videodiaries project in the UK has encouragedother countries to follow this inspiringexample. One of the countries answeringthe call to get involved was Portugal.

Thanks to a generous contribution byWyeth, which partnered with a local organisation – the Portuguese League(LPCDR), Portugal has eight stories ofpeople’s experiences of different rheumaticdiseases. The plan is to use these state-ments during WAD celebrations in thecountry, and at other occasions.

Along with other member countries, thePortuguese stories will be featuring on aEuropean-wide film to be shown at theEULAR Congress in Paris this year. As thenewsletter goes to print, the video diariesof Spain and Italy are being edited. Comeand watch the European stories of peoplewith arthritis at the Rheumatology Con-gress in Paris at the EULAR stand or visitwww.worldarthritisday.org ■

Video diaries updateAt the end of April, the video diaries support material was revised to reflect the Think Positive theme. This will be posted on the password protected area ofthe WAD website for countries running the project to download and translate.Video diaries from a number of countries will be featured on the EULAR exhibi-tion stand at the EULAR congress in June. Would your EULAR national organisa-tion of people with arthritis/rheumatism like to engage in this exciting project?If you have any questions, please contact Birte Glüsing or Florian Klett at theEULAR secretariat. The video diaries 2008 are supported by an educational grantfrom Wyeth.

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‘The small things matter' theme under discussion in Rome for WAD 2007

The XI EULARAutumn Conferencefor PARE (formerlyknown as APOM –Arthritis People onthe Move) will thisyear be hosted bythe Hungarian Arthritis Association on 7-9 November 2008 in Budapest. ‘Wehave changed the name to emphasise thestart of a new era. But as before we arecontinuing to provide education and training opportunities for our member organisations in order to strengthen theirvoice at a national level,’ said SandraCanadelo, Chair of the Standing Commit-tee of PARE.

‘We are really excited that Hungary hasbeen chosen to host the 2008 conference,’said Dr Judit Ortutay from the local plan-ning team. Her colleague, Beata Garay,added: ‘It is such an important event inthe calendar of the European arthritis com-munity and we are proud to welcome ourcolleagues to Budapest.’ Budapest waitsto welcome more than 100 representatives– most of them with personal experience

of living with arthritis and key stakehold-ers in their national member organisations.

This year’s conference programme willfocus on work and rehabilitation as anoverarching theme, and feature it in thecontext of the impact of arthritis on familylife, stress management and standards ofcare. Rehabilitation is a very importanttopic in Hungary. With excellent naturalthermal resources, it is a very famous and

popular country for many Europeans totravel to and benefit from attractive pricesfor the treatment in comparison withhome. But how do Hungarian people witharthritis benefit from this situation andhow is rehabilitation organised? We all

look forward to getting a closer insightinto the daily life of our Hungarian colleagues.

The 2008 conference will again see aposter competition – all delegates will beinvited to display their activities and canlook forward to the chance to win one ofthe attractive prizes. Robert Johnstone,member of the planning team for 2008,has been impressed by the local supportteam. ‘It is great to work together withJudit, Beata, Timea, Pál and Sándor. Theirenthusiasm is inspiring and their warmhospitality will welcome everybody to thislovely city,’ he said.

The conference is currently supportedby unrestricted educational grants fromRoche and Wyeth (platinum level) as wellas Schering Plough (gold level).

A call to apply for hosting the confer-ence in 2009 and 2010 went out in March,and the EULAR secretariat has receivedlots of interest and positive feedback. Thefinal decision will be made in June – comeand visit us on the EULAR websitewww.eular.org to find out who has been chosen. ■

Budapest hosts XI EULAR AutumnConference for PARE

EULAR Autumn conference

‘It is such animportant event inthe calendar of theEuropean arthritiscommunity’

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View ofbeautifulBudapest –the HungarianParliament

Country news

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Without borders – being young withrheumatism in Germany and in neigh-bouring countries was the motto of ameeting of young people with arthritis on27-28 October 2007 in Cologne. Once ayear, young people with arthritis from dif-ferent German regions meet to exchangeexperiences. In 2007, guests from theNetherlands and Switzerland were invitedas well. Talks and workshops were thebasis for a lively cross-border exchangeof experiences.

The meeting focused on three aspectsof living with arthritis as a young person:state support for people with arthritis who continue to work in the different coun-tries; information about support for youngpeople with arthritis in education and

studies; and which medication should betaken into consideration by young peoplewith arthritis when planning to have chil-dren. Besides working on the three mainthemes, there was a lot of room for theyoung people to develop new ideas forworking together across borders.

A vision workshop showed a commonwish to work against the misconceptionthat arthritis is a condition of older peopleand to get other young people to becomeactive in organisations. The meeting wasdeemed a complete success and will hope-fully be the start of future co-operationbetween young people with arthritis. ■

Young people with arthritis/rheumatism having fun at the ‘Without Borders’ event The Patient Passport was launched in Belgium

Crossing borderswith arthritisBy Ursula Faubel, Deutsche Rheuma-Liga

Patient passportlaunch in BelgiumBy Nele Caeyers, ReumaNet

ReumaNet andClair, the twoBelgian patientorganisations,were very proudto present the pilot of the first patientpassport for people with rheumatic con-ditions as the theme of World Arthritis Day2007. The results showed us people werehappy with the document and found it veryuseful in their communication with theirhealthcare team.

Taking into account all comments fromparticipants in the pilot, a working groupsat together to adjust the document to theneeds of the patients. It was good that wecould adapt parts of the passport accord-ing to our needs; for example, we addeda calendar and an agenda to note ap-pointments. An educational grant fromWyeth enabled us to make a very attrac-tive, high-quality booklet.

The Belgian patient passports werelaunched on 4 March in Brussels at a well-attended press conference. All mediacovered the story and, in both the Frenchpart and the Flemish part of Belgium, theresponse was great. People can order thepassports free of charge and ReumaNetand Clair have both had many requests.For countries that might be interested inhaving a look at our achievements, pleasecontact Nele@ReumaNet.be. We will bevery happy to send you some copies. ■

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EULAR supports the BJD: www.boneandjointdecade.org

EULAR Secretariat Birte Glüsing (Project Manager) & Florian Klett (Project Co-ordinator),

Seestraße 240, 8802 Kilchberg, SwitzerlandTel: +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

The Federation for European SclerodermaAssociations (FESCA) was founded in Am-sterdam in June 2006 after our firstmeeting at the EULAR Congress in 2005.Membership of FESCA is open to allpatient organisations in Europe providingsupport for people with scleroderma, witha maximum of two organisations percountry. To date FESCA has 16 membersfrom 13 countries.

Our most pressing projects are the setup of our website – which is still underconstruction – www.fesca-scleroderma.eu,a leaflet about FESCA, participation at theEULAR congress in Paris 2008 (stand B15on the third level facing the ScientificCafé), to lobby Brussels, to produce and

circulate a newsletter,and to plan the first EUScleroderma AwarenessDay to be held on June29 2009. The theme forthe day will be Morethan Skin Deep. Wehope that as manycountries as possible inthe EU will promoteawareness of sclero-derma on the date. Thisparticular date is verypertinent to sclero-derma as the mostfamous person in Europe, and very pos-sibly the world, to have lived and died of

scleroderma is the German-Swiss artistPaul Klee, who died on 29 June 1940.

A word about FESCABy Kim Fligelstone, FESCA

Spotlight on our partner organisations

The Ankylosing Spondylitis InternationalFederation (ASIF) is a central body for 29national or regional ankylosing spondyli-tis (AS) patient societies, representing morethan 50,000 people with AS. Founded in1988, the core message of ASIF is that thebetter informed patients, health profes-sionals and the public are, the better theoutcome for the people affected by AS.

As the disease is chronic and stillwithout cure, patients who are mostly agedbetween 20-40, have recognised the valueof meeting to exchange information,provide support and to do the exercises,which are an important part of treatment.This holds true both on a national and in-ternational level.

ASIF has regular council meetings of del-

egates, covering the fol-lowing topics: exchangeof information, how towork with the media toget coverage of patientissues and ASIF’s contri-bution to research. ASIFhas initiated or takenpart in several scientificinvestigations on AS in

co-operation with leading rheumatologists.ASIF News is sent biannually by email tomembers. Among other things it containsinformation on results of scientific studieswritten in a user-friendly language. More information on ASIF and our activi-ties can be found on our website: www.spondylitis-international.org

A word about ASIFBy Jon Erlendsson, ASIF

KimFligelstone(third fromthe right)with theothermembers ofthe FESCABoard at theInstitutoSalesiano inFlorence

Jon Erlendsson, ASIF President,gave aninterestingpresentation onASIF activities atthe 2007 EULARcongress