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The 10th EULAR AnnualEuropean Congress ofRheumatology is takingplace on 16-19 June inRome, at the FieraRoma. With an expectedattendance of more than14,000 delegates, this year’s congress willagain showcase advances in medical re-search and advocacy work. The ScientificCommittee has done its utmost to put together an inspiring and informative programme.

Neil Betteridge, EULAR Vice PresidentPARE and member of the Scientific Com-mittee, said: ‘After the very successfulPARE congress programmes of the past twoyears, it is quite a challenge to come upwith something equally relevant. However,my colleague Marios Kouloumas and I arevery happy to have the interactive workshopon Saturday run as a joint session togetherwith our scientific and health professionalcolleagues for the first time. With ProfessorPaul Emery and Professor Désirée van derHeijde speaking at these two sessionswhich we have called Facing the facts –communicating effectively with patientsfrom diagnosis onwards and Facing the facts– identifying and agreeing treatment andsupport options with patients we hope tohave found themes which will attract andstimulate a broad audience.’

The first PARE programme sessions on16 June will be: Diversity – engaging with allsections of society, and Work and leisure –achieving a balance between work and life.The PARE programme features prominentspeakers such as Dame Carol Black, whowill talk about the Fit for Work initiative, andJane Asher, famous actress and at the sametime President of Arthritis Care in the UK,who will give the delegates an insight intohow organisations could best involve andreach out to celebrities. On Thursday, other

topics of importance for the arthritis com-munity will be Marketing arthritis – how tosex it up, Rheumatic diseases in the polit-ical arena and two joint sessions on Dia-logue-centred care demands digital supportand Implementing standards of care – theEUMUSC.NET project. One highlight of theday will be the PARE networking evening or-ganised by EULAR, at the beautiful VillaDomus Magnanimi.

Please do not forget to visit the PAREposter area from 12.15-13.15 on Friday 18June when the authors will be welcomingyour questions on their work. The day’s ses-sions will cover areas such as Patient par-ticipation in research and Informed decisionmaking. The PARE congress programme willbe concluded on Saturday with the verypopular Highlight session.

The PARE booth will be located in theEULAR village in Hall 5 and will featurerecent Standing Committee projects andactivities such as World Arthritis Day,EULAR’s Educational Visit Programme andmaterial on activities from national EULAR

member organisations. You can get yourown copy of the 2010 EULAR Stene Prizebooklet featuring a selection of the 2010entries on the topic of Rheumatic Diseasesand work – my daily reality and meet yourEuropean colleagues to exchange newsand information. ■

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

ISSUE 5 2010

Facing the facts in Rome

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London will be thevenue of the EULARcongress in 2011.The PARE congressschedule will againoffer a number ofinteresting topicsfor discussion andinteraction. Pleasenote that the congress will take placeat an earlier date than it usually does,on 25-28 May 2011. All deadlines forsubmission of abstracts etc will be putforward respectively. For more infor-mation on the congress, please visitwww.eular.org

2 < Breakthrough

Inside EULAR

This year, 2010, is an exciting year for our movement in Europe.Once again, we are concentrating on the topic of work and rheu-matic diseases. Collaboration with other EULAR standing com-mittees, scientists and health professionals in rheumatology hasled to outstanding results and we expect that this year rheu-matic diseases will be high up on the health agenda of the European Union and greater raising of awareness will result from that.

The European Parliament’s informal interest group for rheu-matic and musculoskeletal diseases discussed the subject of workat its first 2010 meeting and was presented with two major EULARinitiatives – the Charter for Work and the European Minimum Stan-dards. The interest group’s second meeting, on 6 July in Stras-bourg, will focus on discussing the Belgium Presidency coveringthe second half of the year and the initiatives of interest for the

rheumatology community during this period.Especially encouraging for me is the interest PARE organisa-

tions have shown in launching the EULAR Charter for Work at anational level and using the Working Wonders exhibition for theirnational campaigns. In addition, there was huge interest in theStene Prize competition, the winner of which will be awarded atthe Congress Opening Ceremony. I would like to express my greatsatisfaction for the work being done by our committee and alsothank everyone for their commitment and active participation.

Marios Kouloumas is the Chair of the Standing Committee of PARE

DEAR COLLEAGUES by Marios Kouloumas

This Committeewas provisionallyestablished afterthe EULAR 2006Congress and for-malised in Sep-tember 2007. Thiswas in responseto the growinguse of imaging byrheumatologists(especially modernimaging such asultrasound ormagnetic reso-nance imaging –MRI) reflected in more scientific publica-tions and demands for training. The in-augural Chairperson is Philip Conaghan(UK), and the Committee has links to ra-diologists via the European Society forMusculoskeletal Radiology.

While much work is still ongoing toimprove the technology associated withimaging, the aims of this Committee are topromote: improved patient care through theappropriate use of imaging modalities; re-search and education on how imaging canimprove understanding of arthritis; and theusefulness of imaging tools in the clinic.

The Committee has developed defini-tions and rules for how to acquire images

using ultrasonography in order to stan-dardise use of this tool, which is increas-ingly available in the clinic. A similarapproach has been taken with MRI. The ul-trasound group also run a lot of educa-tional activities for doctors learning to useultrasound and have just surveyed Euro-pean training and clinical uptake of this

technology. As well, a taskforce set up bythe Committee is currently examining theliterature for evidence of what benefitsimaging adds to clinical diagnosis andmonitoring of rheumatoid arthritis, in orderto develop recommendations on how to use modern imaging in a rational and cost-effective way. ■

The EULAR Standing Committee onMusculoskeletal Imaging (SCMI)

Professor PhilipConaghan is theChairperson of theStanding Committee onMusculoskeletalImaging

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Inside EULAR

Professor Kåre Birger Hagen, from Norway,took over from Peter Oesch (Switzerland) asEULAR Vice President Health Professionalsin Rheumatology in June 2009. In this inter-view Kåre talks about projects for the healthprofessionals (HPs) in EULAR and the co-operation between the different branches ofEULAR.

PARE: Could you briefly introduce your-self to our readers? KBH: I’m a physiotherapist by training andworked as a clinician for some years afterI graduated. I have been working with re-search on musculoskeletal disorders for thepast 20 years. I started my PhD studies atthe Karolinska Institute in Stockholm,Sweden, in 1990, and defended my PhDthesis in 1994. At that time we had no Mas-ter or PhD programme for HPs in Norwayand I’m still grateful for being so generouslytaken care of and supervised inSweden. Because many HPs inEurope struggle with access toMaster and PhD programmes, Ithink these kinds of exchangeprogrammes are very important.

After finishing my PhD, Iwent back to Oslo and workedas a researcher at the NationalInstitute of Public Health forsome years. At that time I gotinvolved in the Cochrane Col-laboration, mostly within thefield of back pain, which Ithink has influenced my viewon clinical care, i.e. the treat-ment provided by HPs shouldbe based on research evidence,and treatment decisions should be basedon a shared process between providersand patients.

I’ve worked a couple of years as an ex-ecutive director in the Ministry of SocialWelfare and Health, but in 2004 I wentback to research and started as researcherat the National Resource Centre for Rehabilitation in Rheumatology. The centreis affiliated to the Department of Rheuma-tology at the Diakonhjemmet Hospital inOslo, and I’m head of the Research Unit. In2007, I was appointed as a professor atthe University in Oslo.

PARE: Could you give us an idea of theprojects your Standing Committee willbe focusing on in the next months? Arethere any projects where a co-operationwith the Standing Committee of PAREcould be supportive?KBH: I hope that we can soon produceEULAR recommendations or points to con-sider of special relevance for health profes-sionals. Everyday thousands of people withrheumatic diseases consult HPs across Eu-rope and EULAR should take a leading rolein defining standards of care within all

areas. PARE is of course the most importantstakeholder and collaborator in this work.

PARE: The three parties within EULARhave a joint programme at the EULARcongress each year, which fosters com-munication and better understanding ofeach other’s roles and capacities. In yourview what can patients teach HPs and vice-versa? What do you think are the topicsthat most need to be covered still?KBH: The main mission for EULAR is to im-prove the care and everyday life for peoplewith arthritis. In that respect healthcareproviders have a lot to learn from patients.I think all stakeholders in healthcare nowhave acknowledged and fully recognise NeilBetteridge’s mantra ‘nothing about us with-out us’. From my perspective, interdiscipli-nary work and advanced roles taken by HPsare topics that still need to be covered.

PARE: What are currently themajor problems faced by HPs in Europe? What can EULAR do to help overcome these difficulties?KBH: First, in many (probablymost) countries in Europe HPs donot have access to academicachievement through Master andPhD programmes. Secondly, thereare currently only five nationalmember societies of EULAR HealthProfessionals in Rheumatology,i.e. in most countries we are notvery well organised. I think EULARcan play an important role in help-ing HPs in these areas.

PARE: As EULAR Vice President HPs inRheumatology what are the objectivesyou would like to see achieved within yourfour years of office?KBH: My objectives are:• that EULAR recommendations or pointsto consider of special relevance for healthprofessionals are published• that at least 10 national HP societies inrheumatology become official member organisations in EULAR• to see better integration and co-opera-tion between the three parties in EULAR. ■

Interview with Kåre Birger HagenKåre Birger Hagen is EULAR Vice President Health Professionals in Rheumatology

(above) Professor Kåre Birger Hagen at work

(below) Prof Kåre Birger Hagen (on the right) exchanging views with MEP Jim Higgins duringthe March EP Interest Group in Brussels

News from the heart of Europe

4 < Breakthrough

On 1-2 March 2010, EULAR held the 7thedition of the Alliance Against Arthritis(AAA) initiative in Brussels. This year’sfocus was on the European 7th ResearchFramework Programme (FP7), launched in2007 and lasting until 2013. Despite thegravity of rheumatic diseases, research inrheumatology at EU level is still not ade-quately funded. Applications from themusculoskeletal community have tocompete with other chronic disease areasand are sometimes even excluded fromcertain calls under the FP7 programme.

The AAA FP7 workshop was well at-tended by EULAR delegates. For the firsttime, representatives from EULAR’s na-tional scientific societies joined the event to-gether with patient organisations as thetopic was highly relevant for all. Officialsfrom the European Commission were alsorepresented. Patricia Reilly from the

Research Commissioner’s cabinet and Dr Grigorij Kogan, Scientific Officer inChronic Disease of the Directorate GeneralResearch, expressed their support for ini-tiatives that raise public awareness ofrheumatic diseases in Europe.

The workshop offered an overview of thedifferent key stakeholders at a national andEuropean level, best practice case studies

and a toolbox to help EULAR’s delegates tobe more successful in future FP7 calls. Fur-thermore, the meeting provided the op-portunity for discussing the future FP8 for2013-2019, for which first consultations willstart this autumn 2010.

For more information on AAA please visitEULAR’s website (www.eular.org) and watchour video. ■

Professor MaximeDougados,President Elect ofEULAR, welcomingthe participants tothe 2010 AAAworkshop

The second meeting of the European Parliament Interest groupon Rheumatic and Musculoskeletal Diseases (MSDs) took placeduring the Alliance Against Arthritis event on 2 March. It focusedon MSDs and work and emphasised two recent initiatives – theEULAR Charter for Work presented by Marios Kouloumas, chairof the EULAR Standing Committee of PARE; and the Fit for Workcampaign presented by Stephen Bevan, managing director of theWork Foundation.

The interest group was launched during World Arthritis Day2009 (12 October) and the first meeting took place last Decem-ber. The group is led by MEP Edite Estrela and co-chaired by fiveother key members of the European Parliament, Marije Cor-nelissen, Antonyia Parvanova, Jim Higgins, Sir Robert Atkins andTakis Hadjigeorgiou.

This second meeting was well attended by MEPs, assistantsand the European Commission. Armindo Silva, Director of the Eu-ropean Commission Directorate General for Employment, SocialAffairs and Equal Opportunities, was a key speaker at the meetingand presented the future directive for MSDs related to work. Thedirective will bring the subject, which is currently referred to indifferent texts, under one single legislation. Nevertheless, Mr Silvamentioned that a legislative framework alone is not sufficient; itshould be complemented by guidelines, especially for small andmedium enterprises, on how to create accessibility in the workenvironment.

The next meeting of the interest group will take place on 6 July2010 in Strasbourg, and its last meeting of the year is scheduledfor October 2010.

For further information please visit www.eular.org ■

European Parliament Interest Group onRheumatic and Musculoskeletal Diseases

Alliance Against Arthritis 2010

Rheumatic diseases and the EuropeanUnion’s Belgium PresidencyFrom 1 July 2010, the Belgian government will lead the Euro-pean Union for 6 months. Belgium is the second country to takeover within the European Union Presidency trio with Spain andHungary. One of the key health topics covered by the Belgiumagenda for the first time is chronic diseases. In that scope,EULAR and the European Respiratory Society will both hold aconference in October 2010 which will look at musculoskele-tal and respiratory diseases as major chronic disease chal-lenges in Europe. Further information will be published at the beginning of July with the start of the Belgian Presidency.

(left to right) MEP Jim Higgins (Ireland), Prof Kåre Birger Hagen andStephen Bevan at the meeting of the EP Interest Group on Rheumatic andMusculoskeletal Diseases

EULAR events and activities

Breakthrough > 5

Malta was the firstcountry to host theEULAR exhibitionWorking Wonders in2010. The EULARmember organisa-tion ARAM, theMaltese organisation of people with rheu-matic diseases, prepared a very success-ful launch of the EULAR Charter for Workand the exhibition on 29 January 2010.

The event was held in the main recep-tion of the biggest and most modern hos-pital in Malta, Mater Dei. Professor CarmelMallia, Honorary President of ARAM, wel-comed journalists and invited guests to thepress conference. ARAMwas particularly gratefulfor the attendance of DrKenneth Grech, PermanentSecretary of Health, andthe Head of the Rheuma-tology Department, DrFranco Camilleri, and hiscolleagues. ‘Our organisa-tion has only been in exis-tence for 2 years and thereis still a lot to be done toraise awareness on our island. We are veryexcited to have the support of Dr Grech andhis government colleagues to make rheu-matic diseases a health priority in thefuture,’ said Professor Mallia. He was thefirst rheumatologist of the island state andtrained four more experts who now takecare of Malta’s people with rheumatic dis-eases. He also was the founding force ofARAM and still is very supportive of theiractivities.

Regular information events are organisedthroughout the country to raise awarenessof the first signs of rheumatic diseases sothat people recognise these and avoiddelay in seeing a doctor. These informationtalks are organised by Mary Vella, the Pres-ident of ARAM and affected by rheumatoid

arthritis herself. The information talksattract about 30-50 participants andbesides raising awareness of rheumatic dis-eases are an opportunity for the organisa-tion to gain new members. Ms Vella said:‘An important next step for ARAM would beto have our own offices – at the momenteverything is co-ordinated from our homesand only possible as we have such dedi-cated board members. But our organisationis growing and we hope to have about 300members by the end of 2010. An appro-priate service for them can only be guar-anteed if we can work professionally.’

EULAR was represented by MariosKouloumas, Chair of the EULAR StandingCommittee of PARE, who was very im-pressed by the enthusiasm and profes-

sional organisation of thelaunch, but also by all other ac-tivities planned by ARAM. ‘Maryand her colleagues can be veryproud of what they haveachieved in only two years. It isalso very inspiring to see theexemplary and close co-opera-tion with rheumatologists and

health professionals. It is so important forthe overall success that we work unitedand to speak with one voice,’ said Marios.

The press event and launch of theWorking Wonders exhibition was followedby a conference where Professor Malliagave a short overview about ARAM and anintroduction to rheumatic diseases, whileMarion Rizzo, CEO of the Mater Dei,introduced the hospital and its manyservices to the audience. The President ofthe National Commission for Persons withDisabilities, Joe Camilleri, highlighted theissue that work is a right of all citizens.The day concluded with a very informativetour through the hospital with a specialfocus on occupational therapy.

The Working Wonders exhibition hassince then been shown in the UK, France,Slovenia, Cyprus and Sweden. Croatia,Greece, Germany and Russia are planningactivities around the EULAR Charter forWork and intend to launch the exhibitionin the second half of 2010. To seephotographs of the events and read moreplease visit www.worldarthritisday.org. If you would like to see the exhibition in your country, please contact BirteGlüsing at the EULAR secretariat on birte.gluesing@eular.org for furtherinformation. ■

Working Wonders debuts in Malta

(above) Professor Malliaspeaking at the conference

(far left) Marios Kouloumasand Dr Kenneth Grech, theMaltese Permanent Secretaryof Health (on the left)

(left) Professor Mallia gives alecture to local people toraise awareness aboutrheumatic diseases

Professor Carmel Mallia (first onthe right), welcomed everybodyat the launch of the exhibition

This year the EULAR Au-tumn Conference forPARE will be held 5–7November in Berlin andhosted by the DeutscheRheuma-Liga. As one ofthe largest and most established nationalorganisations of the PARE network, theDeutsche Rheuma-Liga will be able to shareits perspectives, experience and best prac-tices with delegates from all over Europe.

Work will continue to be the theme for the2010 programme. About 120 delegates areexpected to join the conference and to en-gage in sessions focusing on rehabilitationand younger people in education.

On 5 November the Autumn Conferencewill officially open with an address by Pro-fessor Angela Zink, Head of Epidemiology atthe German ResearchCentre for RheumaticDiseases in Berlin andChair of the EULARStanding Committeeof Epidemiology. Thiswill be followed by up-dates on EULAR proj-ects including theCharter for Work, theWorking Wonders ex-hibition and the political activities happeningin Brussels during the Belgium Presidency,including the launch of the Brussels Declara-tion on Rheumatic Diseases. Delegates willbe offered a choice of workshops looking at:targeting different age groups of people withrheumatic diseases; implementing the Brus-sels Declaration at a national level; the EU-MUSC.NET project collecting data on muscu-loskeletal diseases across Europe; and thestatus of the implementation of the UN con-vention of rights for people with disabilitiesacross Europe.

Sessions on 6 November will focus on as-pects of rehabilitation to help keep peoplewith rheumatic diseases fit for work and lifepresented by Stephen Bevan, Managing Di-rector of the Work Foundation in the UK andProfessor Wilfried Mau, Director of the Med-ical Department of the University of Halle,Germany. There will be a panel discussionwith country case studies with a choice of workshops to look at different aspects of rehabilitation or to develop European

Minimum Standards of Care (EMSC) for peo-ple with rheumatic diseases. The EMSC islinked to the EULAR Charter for Work and willspecifically look at how healthcare profes-sionals can best support people with rheu-matic diseases in gaining employment, re-maining employed or re-entering theworkforce. For organisations wanting to ben-efit from others’ experience, the Share Fairwill be held after the presentation and work-shops, followed by dinner.

Sunday 7 November will focus on target-ing young people with rheumatic diseases,with a presentation by Judy Ammerlaan, spe-cialist nurse in rheumatic diseases in theNetherlands. She will look at the different approaches needed to communicate with,and support, young people with rheumaticdiseases and a project developed by the University of Utrecht. The session will be followed by country case studies and workshops to help national organisationswork more effectively with their youngermembers. ■

EULAR events and activities

6 < Breakthrough

Prepare to headsouth in 2011 For the first timesince Italy hostedthe event in 2006 inRome, the EULARAutumn Conference for PARE is againtaking place in a country of southernEurope. The Hellenic League AgainstRheumatism, ELEANA, is preparing tohost the conference in the city ofAthens on 25-27 November 2011.Maria Batziou, PARE Board memberand member of ELEANA, said: ‘Theproblems of southern European coun-tries are often different from those ofthe rest of Europe and we hope toconvey our perspective to participantsand to get advice to find solutions toovercome these problems. Having theconference in Athens will also help usto raise awareness with politicians andother key stakeholders.’ ■

Berlin welcomes AutumnConference in 2010

Berlin gets ready tohost the AutumnConference inNovember

EULAR events and activities

Breakthrough > 7

World Arthritis Day (WAD) continues tosupport the theme of work in 2010 andthe introduction of the Charter for Workfor people with rheumatic diseasesacross Europe. Cyprus, Malta, Greeceand the UK have already successfullylaunched the Charter for Work. A bestpractice guide featuring these launch-es is being developed and will beavailable to all EULAR national organi-sations of PARE later this year. Theguide will include information on howthe launch events were planned andexecuted, what made them a success,plus hints and tips from the featuredorganisations.

Other resources being developedinclude a presentation and information pack for national organi-sations of PARE to use when introducing the Charter for Work andEuropean Minimum Standards for Work (EMSW) to employers andtheir organisations, and a video demonstrating some of the simpleand cost-effective adaptations that can help people with rheumaticdiseases to work productively.

The WAD website has been given a fresh look. It provides thehub for news and information about WAD and repository for re-sources. Watch out for increased activity on the WAD Facebookpage this year. ■

The Stene Prize 2010, rewarding the bestessay by a person with a rheumatic dis-ease, will be delivered during the OpeningCeremony of the Rome EULAR congress on16 June. This year’s winning essay, with thetheme Working with a rheumatic disease –my daily reality, comes from Denmark andwas written by Karin Nørgaard, who said: ‘Ithought it would be a fun challenge and anopportunity to see myself and my diseasefrom the outside. A driving force was alsoto thank the clinic where I work for theircomforting way of treating me when mybatteries are a bit low.’

The Stene Prize jury was given the taskof choosing from 18 contributions sent inby national patient organisations in coun-tries such as Cyprus, Finland, Hungary andIceland. Each national PARE organisation se-lected their best contribution. Standing inas a member of the UK judging panel forthe first time, Sarah Rich, from ARMA, thenational EULAR member organisation, said:‘It was an amazing opportunity to be in-volved in the Edgar Stene Prize. The UK

received 34 entries. All of the essays ad-dressed the title and gave us an insight intothe authors’ working day and how they in-dividually cope and adapt. The essayswere presented as inspiring stories from

positive people. The UK judging panelchose Victoria Garratt as we felt she demon-strated how her chronic illness had a con-structive impact on her daily reality ofworking with a rheumatic disease.’ ■

Denmark wins Edgar Stene Prize 2010

2010 Stene Prize winner, Karin Nørgaard (Denmark) at her workplace

Mark World Arthritis Day 2010WAD on FacebookSee what is being done for WADthis year by visiting the new Face-book page. The page administra-tor, Sesilie Halland, representativeof the Norwegian League andmember of the PARE board, is asocial media expert. Sesilie stat-ed: ‘To maximise the potentialoutreach to the public, it is time toaspire to the next level of socialmedia activities for World ArthritisDay.’ Please visit the new page onFacebook – www.facebook.com/worldarthritisday

If you are marking WAD this year,please let us know about yourevents. It has become even easierfor your events to be published on our website and to find outwhat is happening around theworld. For more information visitwww.worldarthritisday.org ■

The WAD website hasrecently been given a freshnew look

8 < Breakthrough

EULAR events and activities

EULAR taskforces develop many guidelinesand recommendations on management ofrheumatic diseases. These taskforces haverecently started to incorporate the perspec-tive of patients into their research e.g. theEULAR/ASAS Taskforce for Recommenda-tions on Ankylosing Spondylitis or theEULAR Taskforce on Glucocorticoids. Sever-al EULAR projects have already benefitedfrom taking the view of patients into ac-count. Having personal experience with thecondition often gives other insights intomanagement and treatments – the impactof taking medication every day, and thepain and the fatigue. Despite their non-medical training, the input patients give intoresearch projects is highly valuable.

To make sure patients are able to con-tribute a full 100% to research and guideline

development, pilot training for patient re-search partners will take place in October inBrussels. Until now, there have been no train-ing opportunities for patient representativesworking in the field of research. Nevertheless,by providing appropriate support, EULARcould set a worldwide standard of exemplaryinvolvement of patient representatives.

For this reason the Standing Committee ofPARE is organising a pilot two-day trainingcourse in 2010. Sixteen people with a rheu-matic condition will get acquainted with thebasic principles of research and learn how tohave an impact on the process of research.They will become familiar with the structureof EULAR and discover the value of their ownexperiential knowledge. The project manag-er, Maarten de Wit, from the Netherlands,said: ‘The final objective will be to establish

a sustainable group of patient research part-ners who are able to represent the patientperspective in a variety of EULAR projectsand activities.’ All PARE member organisa-tions are being contacted in the search forpilot training participants to make sure thereis a diversity of rheumatic conditions and ge-ographical spread.

The pilot training course will take theEULAR recommendations for the inclusion ofpatient representatives in scientific projectsinto consideration. These will be publishedin the Annals of Rheumatic Diseases and bepresented during the EULAR congress inRome in the joint session Patient participa-tion in research, to be held on Friday 18 June,13.45-15.15, Room 10D-E with presentationsfrom Maarten de Wit, Lars Klareskog, SarahHewlett and Pamela Monty. ■

Different EULAR taskforces already have experience in workingwith patient research partners. Five patients participated in theWorking Group on Glucocorticoids and contributed to the paperPatients' and rheumatologists' perspectives on glucocorticoids– an exercise to improve the implementation of the EULAR rec-ommendations on the management of systemic glucocorticoidtherapy in rheumatic diseases.

Guy Severijns, from Belgium was one of them. ‘Medicalexperts work with pure dedication, but it surprised me to seehow many questions were still unanswered. To contribute tothe process of finding the necessary answers is just wonder-ful. Despite the fact that I do not have a medical background,my experiences with living with a chronic condition give otherinsights to research. Often, it is the small things we experienceevery day that doctors are not aware of,’ said Guy.

Professor José Pereira da Silva, from Portugal, stressed the importance of patient participation: ‘Most doctors share a naturaltendency to look at diseases from the perspective of the patient,trying to unravel the person behind the body, the suffering behind the disease. However there is always a lack of time, too many technical details and too much bureaucracy betweenthe doctor and patient. Medical experts look for evidence for improvements in treatment. We need to go back to the essenceof medicine: improving quality of life, changing people’s lives for the better. No matter how compassionate doctors are, onlypeople who have suffered from a disease can tell what it is like to live with it. We need patients by our side in research to make sure we always keep in mind what medical research is all about: people, their hopes, anxieties, dreams, pain and needs.’ ■

Pilot training for patientpartners in researchBy Nele Caeyers, Patient Research Partner

The participants of the EULAR Taskforce on Glucocorticoids, with Guy Severijns (Belgium) sitting second from the left and Professor José Pereirada Silva (Portugal) standing far left

Every two years the Deutsche Rheuma-Liga(DRL) brings together leading representa-tives of the German youth group from allGerman Federal lands. From 4-7 June2009 the city of Hamburg was the venuefor the gathering of 20 young people. Theset theme for the days ahead was CreativeEnergy and from the beginning it becamevery clear that young people with rheu-matic diseases have a lot of it.

The first day saw the traditional openingevening reception. ‘The opening is alwaysa highlight of the meeting. We try to findsome funny acts or games fitting the topicof the whole weekend. This helps us get to know each other in a relaxed and inter-esting way,’ says Tom Amende, vice-chair ofthe board. The next day two workshopswere held simultaneously. One was amovie-making experience. The aim was tomake a short film about young people witha rheumatic disease, how they cope withthe disease, their experiences since the

diagnosis and the impact the disease hason their lives. A film producer and a cam-eraman filmed the ideas that came up. Thesecond workshop was led by a journalistwho showed the group how to writecatchy articles about being young with arheumatic disease.

The second day brought in a personalcoach. This time the whole group workedtogether and learnt about inner structuresand behaviour mechanisms. Through role-play and other techniques everyone had thechance to find out more about themselves.

‘It was so interesting to realise how otherssee me and how I see myself. And I’d neverthought that I’d have a potential for acting.It was so much fun that I really would liketo have more of it,’ said Gertie, one of theparticipants.

The weekend was a full success. Partic-ipants shared their energy, but they alsotook lots of it back with them into theirdaily lives. The outcomes, a film, a lot ofpictures and an overview of the work of theDeutsche Rheuma-Liga’s youth group can befound on www.rheuma-liga.de ■

The right to work is very important to peoplewith rheumatic diseases as it is essential foractive participation in life. In Greece, thelabour rights of people with rheumatic diseases are not clearlydefined and not yet protected by legislation. This is the reasonwhy implementing the EULAR Charter for Work in Greece andraising awareness about rheumatic diseases in society is an im-perative need.

Members of Greek League against Rheumatism were invitedto support the charter and the Let’s work together survey, whichwas conducted from June to July 2009. More than 356 people par-ticipated – 123 of whom were employers. The results were pre-sented to the media, representatives of the medical communityand state officials at a press conference in September 2009. Morepresentations followed in the larger cities in the south, west andnorth of Greece. Last December the results of the Greek surveywere presented to the medical community at the Greek AnnualRheumatology Congress in Thessaloniki.

Future plans include launching the Charter for Work along withthe results of the survey to the political community, pressing fornew and fairer legislation to enable people with rheumatic diseases to enter, retain and/or rejoin the workforce. ■

EULAR Charter for Work launched in GreeceBy Maria Batziou, ELEANA

Creative EnergyBy Gudrun Baseler, chairperson, board of the young people with rheumatic diseasesgroup in Germany

Maria Batziou, ELEANA representative and PARE board member, presentsthe Let’s work together survey results to the media

(left) The making of a short film on the experience of having rheumatism and (right) theparticipants of the Creative Energy weekend in Hamburg

Breakthrough > 9

Country news

10 < Breakthrough

Country news

Arthritis Ireland is Ireland’s only arthritischarity enabling people with arthritis totake their lives back. We empower peoplewith arthritis and those caring for them totake positive actions to manage the effectsof their disease on their lives.

Our key objectives are: supportingpeople with arthritis, finding a cure and lob-bying for better patient care.

Our daily role is to help people witharthritis live their best life by providingsupport and high quality information. Weprovide a wide range of information leafletscovering different kinds of arthritis, givinguseful advice on coping with the condition.We also have a Living Well with Arthritis pro-gramme. This award-winning workshophas been proven around the world to de-crease pain, reduce reliance on healthprofessionals and medication and signifi-cantly improve a sense of well-being.

Delivering and communicating messages

to the public is of vital importance to Arthritis Ireland. We do this through ourwebsite, our helpline and by actively en-gaging in social media including Twitter,Facebook, Bebo, our blog, and YouTube. In-formation is also provided at events that areorganised by our network of branchesaround the country.

A number of fundraising events arealso held throughout the year. Our mostpopular events are: the annual Get yourJoints in Motion walking challenge for2010, the annual golf classic, and The JasperCampaign which raises funds and lobbiesfor improved services for children in Irelandwith juvenile arthritis. ■

The Czech League hasexisted for 18 years,but we have onlyabout 600 members, who do not all actively participate in ourseven regional groups. We wanted to improve the structure of ourorganisation to make it more attractive to new members. TheDeutsche Rheuma-Liga (DRL) was our Teaching Organisation inthe EULAR Educational Exchange Visit Programme.

The first part of the educational exchange took place over threedays in November 2009. We learnt a lot about the work done bythe board of the German organisation and voluntary work ingeneral. Topics such as different styles of leading a group, dem-ocratic decision making and solving problems were covered.

In addition we had a long and very fruitful discussion with ErikaChrist, member of the DRL board, and Christel Christe, Secretary-General of the Deutsche Rheuma-Liga Rhineland-Palatinate, on theprinciples of their work and how to use their experiences in startingcampaigns and changing mechanisms in our own league. We planto copy the DRL’s approach to prescribed rehabilitation training forpeople with rheumatic diseases, as this would attract members.

The first results of this exchange were introduced to the membership in early December at the Conference of Czech

Rheumatologists. The feedback was very encouraging and weworked hard to prepare the second part of our visit – a seminarfor our membership to discuss the changes, which took place in February. Our German teachers were present to support the meeting. ■

The Czech educational exchange with GermanyBy Alena Slamova and Hana Konecna, Czech League Against Rheumatism (Revma Liga v CR)

Introducing Arthritis IrelandBy Lisa Mehigan, Arthritis Ireland

The Czech representatives on the right, taking part in Fit for the boardseminar in Germany

Images of the 2010 Get your Joints in Motion event, which took place on 8 May

ENFA members thank members of the EP for their support with thesuccessful approval of the Written Declaration on Fibromyalgia

Breakthrough > 11

Spotlight on partner organisations

The EUMUSC.NET project, which kickedoff in Luxembourg in March 2010, isprogressing. The 3-year project is be-ing co-ordinated by Professor AnthonyD Woolf, Royal Cornwall Hospitals Trust, UK. EUMUSC.NET is be-ing supported by a grant of over €950,000 from the EuropeanCommission, a grant of €300,000 from EULAR, and time com-mitments from professional, scientific and patient organisationsin 22 centres across Europe.

The project was initiated in March 2008 with a preparatory work-shop held by EULAR. The project was developed to tackle the factthat although musculoskeletalconditions have a great impactacross EU member states andcan be effectively diagnosed,prevented and treated, this isnot happening equitably acrossEurope. It is important to stressthat this is the first project tobe successfully funded by theEU that has been developed asa collaboration between pa-tients, health professionals inrheumatology, researchers andclinicians since its beginning,which was key to a successfulapplication.

The EUMUSC.NET project willspecifically: identify the burden on individuals and society of mus-culoskeletal conditions across EU member states; set standards ofcare for healthcare provision for people with osteoarthritis andrheumatoid arthritis; assess whether these standards are beingachieved in countries across Europe; and help overcome the bar-riers to achieving these standards to enable the effective and equitable prevention and management of these conditions inmember states. Policy recommendations for the implementationof a community strategy on musculoskeletal conditions will be pro-posed, and examples of good practice will be highlighted so thatthey can be copied. A sustainable European Musculoskeletal Con-ditions Surveillance and Information Network will also be createdthat will be embedded within EULAR, and involve key stakehold-ers in Europe on musculoskeletal conditions.

The outcomes of the project will be widely disseminated througha web-based health information system, through reports and bypresentations at various meetings including EULAR. There will bea joint session on EUMUSC.NET during the EULAR congress in Romeon Thursday 17 June, 15.45–17.15 in Room 10 D-E. ■

The European Network of Fibromyalgia Associ-ations (ENFA) is comprised of 14 members from11 countries at present. Its aim is to lobby forspeedier diagnosis and more effective treatmentfor all European citizens with fibromyalgia.

Fibromyalgia is a complex disease with avariety of symptoms in addition to the defining symptom – chronicwidespread pain. Fibromyalgia imposes large economic burdenson society as well as on affected individuals. A study showed thatan average patient in Europe consults up to seven physicians andtakes multiple types of medication over 5-7 years before receiv-ing the correct diagnosis. The debilitating symptoms often resultin lost work days, lost income and disability payments. ENFA suc-cessfully supported the Written Declaration on Fibromyalgia, ac-cepted in December 2008 by the European Parliament (EP), whichcalled on the European Union to recognise fibromyalgia in Europeas a disease, as WHO did in 1992. This declaration called for: theEuropean Council to help raise awareness of the condition and fa-cilitate access to information by health professionals and patientsthrough awareness campaigns; member states to improve accessto diagnosis and treatment; research on fibromyalgia to be facil-itated through the work programmes of FP7 and future researchprogrammes; and the development of programmes collecting dataon fibromyalgia.

Following on from this, ENFA now has to lobby for the neces-sary commissions to take action and encourage national associ-ations to do the same in each member state. Our first aim for 2010is to increase the membership from all member states, assistingsome countries to set up their own national organisation. We arealso forming an advisory board of medical professionals so thatinformation and advice is readily available to the commissionersas required and documented evidence can be produced.

We will still be ensuring that MEPs remain aware of the prob-lems faced by people with fibromyalgia so that pressure is sus-tained to provide the improvements so desperately needed. ■

EUMUSC.NETproject goingsteady after kick-off in MarchBy Prof Anthony Woolf, EUMUSC.NET co-ordinator

European Networkof FibromyalgiaAssociationsBy Pam Stewart, Vice President of ENFA

Professor Anthony D Woolf, theEUMUSC.NET project co-ordinator

12 < Breakthrough

Spotlight on partner organisations

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

BREAKTHROUGHEULAR Vice President

Neil BetteridgePARE Standing Committee

ChairpersonMarios Kouloumas

EULAR Executive SecretariatBirte GlüsingFlorian Klett

EULAR EU Office BrusselsSören Haar

Laura Jakovljevic

EditorMinal Chande, Arthritis CareNewsletter Co-ordinator

Sandra CanadeloPublisher

EULAR Standing Committee of Peoplewith Arthritis/Rheumatism in Europe

Number of copies: 2,000 The Standing Committee of PARE would

like to thank all those who havecontributed to this newsletter.

In Florence on 12 February 2010, the Feder-ation of European Scleroderma Associations(FESCA) held the first World Scleroderma Pa-tient Congress. It was part of a dual eventorganised with EUSTAR (EULAR SclerodermaTrials and Research) — a 3-day scientific congress and simul-taneous 1-day patient congress. Over 1,300 people attended thecongresses – 143 of them were patients. Patients came not onlyfrom all 14 FESCA countries and its 19 separate organisations,but also from Canada, the USA, and Australia. Nine speakers ad-dressed patients, focusing on different areas of the disease, andquestion-and-answer sessions followed each session.

The congress was a very positive event in more ways than onefor patient organisations. Some of the organisations were newlyformed, like those in Poland, Denmark, and Portugal, while otherswere well-established, like France and Ireland. For some, likeGermany, support and advocacy work had been entirely nationaluntil recently. Kathleen Polfliet, a patient representative fromBelgium, said: ‘The World Congress helped me a lot, because al-though being among other patients intensely in a situation likethis was quite emotional, it was also very supportive. It was com-forting to be among people who understood what I go through,because they too live with the problems of scleroderma every day.Normally, nobody understands.’

The opening ceremonies honoured patient support groups asa valuable part of the team fighting this debilitating disease. Thecongress steering committee invited both the president of EULARand the president of FESCA to speak. This was a congress whereboth patient and doctor input was respected. ■

The Ankylosing Spondylitis Interna-tional Federation (ASIF) was foundedin 1988 and is based in Denmark.ASIF brings together patient groupsfor people with AS throughout the world. Currently membershipis predominantly from European countries plus Australia, Canadaand the US. ASIF meets regularly every 2 years and has a numberof important functions which carry on throughout the year. Oneof the most vital has been the ASIF contribution to research soably led by the ASIF scientific adviser, Prof Dr Ernst Feldtkeller.

Members of the ASIF Executive, the majority of whom are in-dividuals with AS, have worked with the Assessment of Spondy-loArthritis international Society (ASAS) and EULAR to produce apatient version of the ASAS/EULAR recommendations for the man-agement of AS and to develop a new tool to assess the impact ofAS on quality of life.

ASIF is now a co-opted member of the EULAR Standing Com-mittee of PARE and we look forward to working with PARE to raiseawareness of the issues confronting people with inflammatoryarthritis and in particular the impact on work and life for both theindividual and those around them.

ASIF produces a newsletter twice a year which brings togethercontributions from member societies. If you run a national or-ganisation for people with AS and would like to join ASIF pleasego to the website www.spondylitis-international.org for more in-formation on the work of ASIF and links to member societies. ■

Scleroderma PatientCongress, FlorenceBy Ann Tyrrell Kennedy, President of FESCA

Attendants of the World Scleroderma Patient Congress in Florence

Participants of the last ASIF meeting in Austria in October 2009

More about ASIFBy Cor van Drogen and Jane Skerrett,Members of the ASIF Executive Committee