A MESSAGE FROM THE CHAIRPERSON

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1 The Newsletter of LUPUS EUROPE Winter 2009 A MESSAGE FROM THE CHAIRPERSON I can hardly believe that it is a full year since I wrote my first Chairman s letter for Caring & Sharing. Conversely, I am finding it difficult to realise how everything that has been undertaken by LUPUS EUROPE since the change of name has fitted into just one year! There have been very exciting developments but, alongside these, there have been extremely sad times. The loss of our dear Friends Krisztina Hevér (Hungary) and Rudi Hocks (Vice-Chair) filled us all with such sadness that it seemed difficult to carry on. However, we all knew that we had to continue, we had to keep working to promote LUPUS EUROPE and to help lupus patients throughout Europe. We had to give meaning to the lives of Krisztina and Rudi and ensure that the work they had begun would continue as they would have wanted. During the September Convention in Strasbourg, Ineke Boomker (The Netherlands) stepped down from the position of Trustee/Convention Manager and Brian Hanner (UK) stepped down as Co-opted Project Advisor. Ineke and Brian have both been loyal Trustees and supporters of LUPUS EUROPE (and, previously, ELEF, of which Brian was Chair for several years). I am sad to have lost the input of Ineke and Brian but am pleased to welcome Kirsten Lerstrøm as Vice-Chair and Fatima Lavoll (Norway) and Simone Müller-Pretis (Germany) as Trustees. What else has happened during the year? The Strategic Plan, begun during February, is a big project. Making decisions and promises on behalf of a charity that cares for 22 member Groups is a massive responsibility for the Trustees and Co-opted Advisors. Input from member Groups has been very much appreciated and, as soon as is possible, an updated version will be ed to all member Groups. As part of the Strategic Plan, a Medical Advisory Panel for LUPUS EUROPE has been established and thanks go to the five Lupologists who have already committed their support. The Common Cause, begun in 2008, is still work in progress but has been continued with a presentation of the main topic, Fatigue, being put to a Team of Lupologists from several European countries at a Meeting in Zurich during March, to patients and medics in the UK during August and to the Convention in Strasbourg during September. Further work will be carried out on this during 2010 by the Project Team lead by Kirsten. The Website Team are working well and the longawaited new website should be ready early This is a very exciting project. During June, the Trustees and Co-opted Advisors were thrilled to be able to set up a LUPUS EUROPE stand at EULAR in Copenhagen and were pleased to have support from members of Lupus Denmark and to have representatives of other member countries visit the stand. The highlight of EULAR, however, was the satellite Lupus Symposium which saw Kirsten take to the stage alongside Prof David Isenberg (UK), Dr Michelle Petri (USA) and our own Prof Matthias Schneider to give a presentation based on the Survey which members of LUPUS EUROPE and LFA had completed prior to EULAR. This Lupus Symposium was a first for EULAR and a big thank-you goes to all who instigated and supported the event, helping to really put lupus and UK CHARITY COMMISSION REGISTERED ADDRESS St James House, 27-43, Eastern Road, Romford, Essex RM1 3NH, United Kingdom Registered Charity No Continued on page 7 MEMBER COUNTRIES: Belgium, Cyprus, Denmark, Finland, France, Germany. Hungary, Iceland, Ireland, Israel, Italy, Malta, The Netherlands, Norway, Portugal, Slovenia, Spain, Sweden, Switzerland, United Kingdom

2 CARING & SHARING WINTER 2009 Page 2 SECRETARY S REPORT This past year has been a year of a lot of changes. First of all, we started off with a new name: ELEF became LUPUS EUROPE. It makes clear of what we stand for. Together with the new name, the group got a new Chair and Secretary. Yvonne Norton took over the task of Jean-Paul Sanders, and Tony Bonello handed over the position of Secretary to me. Kirsten Lerstrom was co-opted by the board. We knew this was going to be a year of hard work and learning for us, but were ready to go for it. And so we did. The Board of Trustees met in February in Dusseldorf, and in June in Copenhagen for two Meetings of Trustees. The Copenhagen Meeting was linked to the annual EULAR conference in the same city and our first presence at the congress. The stand at the exhibit hall and the Satellite Symposium got a lot of attention and very positive for our cause. The Minutes of both Trustee Meetings were distributed among all members. The board also met in February in Brussels for two days of hard work on the Strategic Plan. Together with a consultant from Think Solutions we locked ourselves in a room in a Brussels hotel, far away from all distractions and focussed on what we would like the lupus world to look like in a few years time. The result was a ten page document, that still needs to be finalized and worked with during the next days. Other projects continued, such as the website and the common cause, of which you will hear later on. As communication between the Board and the member countries was not really on a high level, we tried the concept of the Newsflash this year. A short letter with latest developments of LUPUS EUROPE brings the news straight to all people interested. Links are in to get more details or information. We do hope these Newsflashes are of help and that they are read all through Europe. Any suggestions or matters of content are always welcome. We are happy to distribute your news via the Newsflash too and are willing to learn from your best practices. Our working with other stakeholders in the Lupus Field reached a higher level of which we will all benefit in the future. This was my first year as LUPUS EUROPE Secretary, and it has been an interesting year. Things can always improve and we are all willing to learn. But we believe we are working towards the same goal: improve the quality of life of all people with lupus. Nele Caeyers LUPUS EUROPE Secretary Inside this issue A Message from the Chairperson 1 Secretary s Report 2 LUPUS EUROPE attends EULAR for the first time 3 Our Medical Advisor writes 4 Promise of new Lupus Treatment is a Groundbreaking achievement Spotlight on. Gruppo Italiano LES 6 LUPUS EUROPE Trustees & Medical Advisory Panel 8 New Website for LUPUS EUROPE 9 LUPUS EUROPE 2009 Highlights 10 Annual Convention in Pictures 11 National Reports Lupus Passport - Emergency and Prevention 20 In Memory of our departed ones 22 LUPUS EUROPE Trustees 23 LUPUS EUROPE International Contacts 24 CARING & SHARING Caring & Sharing is the newsletter of LUPUS EUROPE, published in December each year. Articles are to be in English only and sent to the editor by the 15 th October. Articles appearing in the newsletter do not necessarily reflect the opinions of LUPUS EUROPE, its officers or members. 5 The editor s decision regarding publication is final and the right is reserved to edit or shorten articles. Anyone submitting original papers for publication and wishing to reserve copyright, should ensure that their full name and the year of publication, together with the sign is added to the end of the article. Editor Anthony M Bonello ambonello@hotmail.com

3 CARING & SHARING WINTER 2009 Page 3 LUPUS EUROPE attends EULAR for the first time With support from pharmaceutical companies UCB and Merck Serono, LUPUS EUROPE was able to have a presence at EULAR (European League Against Rheumatism) for the first time. Originally, it was understood that the 6 Trustees and 2 Coopted Advisors 1 would just be able to attend then it became possible to have a stand 2 in the non-profit groups area, then, oh joy of joys, it became possible to have a Satellite Symposium 3 the very first for lupus in the 10 years of EULAR! The Symposium - Lupus- Considering the Future - was held at pm, Friday, 12th June, and attracted just under 300 attendees, a wonderful number considering the day's events officially closed at 5.15pm! 1 The Symposium was chaired by Prof David Isenberg 4 (UK) with the Speakers being Dr Michelle Petri (USA), Prof Matthias Schneider~ (Germany), Prof Isenberg and Kirsten Lerstrom (LUPUS EUROPE Trustee). Following the excellent Talks (how fantastic that LUPUS EUROPE attracted the services of three world-famous lupus consultants) there was an Interactive Session of Questions and Answers when the likes of Prof Caroline Gordon (UK) and Dr Joan Merrill (USA) not only asked questions but also commented on the future of lupus. Other questions were put by consultants from countries such as South Africa and Mexico. 2 Thanks to UCB, an abstract booklet was available for all attendees along with a LUPUS EUROPE leaflet (Merck Serono). Posters advertising the Symposium were displayed throughout the vast Congress Centre and included in special Symposium booklets and other EULAR literature. The LUPUS EUROPE roller banners were displayed both at the stand and lecture auditorium and, throughout the day and during the Symposium, most of the Trustees wore LUPUS EUROPE polo shirts, causing Prof Isenberg to comment, "I see Team Norton is here!" During the two full and two half days of EULAR there were a number of Lectures and presentations on lupus. This is the biggest spotlight that has ever been on lupus at EULAR - perhaps having a UK consultant, Dr Andrew Cope, as Chair of the Scientific Programme Committee helped! 3 The time spent at EULAR was very busy. As Chair of LUPUS EUROPE I had wall-to-wall meetings but was still able to attend a few complete lectures, or, in some cases listen to the talks given by doctors I was particularly interested in hearing. Continued on page 7 4

4 CARING & SHARING WINTER 2009 Page 4 OUR MEDICAL ADVISOR WRITES Vaccination During the last weeks the most often asked question in my office and on the phone was Should I, as a patient with lupus, get a swine flu vaccination? I do not know whether all European countries had the same campaign for swine flu vaccination, a hype with tendency to hysteria. Without better knowledge, I referred to the recommendation of the German official agency (STIKO) who advise a vaccination against H1N1 influenza for all people with chronic diseases that may affect immune system function. In parallel, one of my patients, a lady in the end of her 50 s with a history of more than 20 years of lupus treated with 10 mg methotrexate weekly and 200 mg hydroxychloroquine daily, developed septicemia from pneumococci pneumoniae. By early detection and luck she survived from the multi-organ failure. Vaccination in lupus has several pathophysiological aspects and also plenty of rumours. Vaccination is the administration of antigenic material (the vaccine) to produce immunity to a disease. Vaccines can prevent or ameliorate the effects of infection by a pathogen. Vaccination is generally considered to be the most effective and cost-effective method of preventing infectious disease and we know that - due to the often necessary immunosuppression - infectious diseases are under the major risk factors for death in lupus patients. From this perspective, every patient with lupus should be vaccinated at least according to recommendation for healthy people (Tetanus, Diphtheria and Poliomyelitis; for adults over 60 years Pneumococci and Influenza). The EULAR recommends in addition a vaccination against Hepatitis B. In patients without spleen or with asplenic syndrome (a rare manifestaton of lupus) vaccination against Pneumococci, Haemophilus influenzae and Menigoccoci are suggested. We also recommend this triple vaccination for lupus patients that are going to be treated with rituximab. This brings us to another aspect of vaccination in lupus patients: do patients with lupus benefit from vaccination? It is obvious that in a situation with complete B cell depletion, as under rituximab and/or cyclophosphamide, the response of the immune system that is necessary in active vaccination for a successful protection against the target virus/bacteria is insufficient. That makes a prior vaccination before therapy mandatory. There is data showing that under other immunosuppressive medication like azathioprin or methotrexate the overall success of vaccination may be reduced compared to healthy people but the studies indicate that there is overall no higher risk for side effects due to vaccination in lupus patients. The fear for more side effects in lupus is based on the immune system stimulating effect that is inherent in active vaccination that may also boost the existing pathologic autoimmune reaction of lupus. We also asked our patients in Germany for the vaccination status and their reactions to vaccine application. These data also indicate that the recommended vaccinations are safe in lupus patients, but they also show us that the vaccination status in our patients is poor. The vaccine used in Germany for H1N1 Influenza contains a booster substance that unspecificly stimulates the immune system. The effect of this booster is not investigated in autoimmune patients and, therefore, this vaccination has to be evaluated carefully. Some vaccines contain live, attenuated virus microorganisms. Examples include yellow fever, measles, rubella and mumps. These are live micro-organisms that have been cultivated under conditions that disable their virulent properties. They typically provoke more durable immunological responses and are the preferred type for healthy adults. These vaccines with live microorganisms are contraindicated in patients under immunsuppression. There is one other aspect of vaccination that may, hopefully, come up for lupus patients sometime. The ultimate goal in the treatment of autoimmune diseases is to re-establish tolerance to self antigens. One strategy to induce tolerance is to express the target autoantigen by DNA vaccination. This is tried already in experimental autoimmune encephalomyelitis, unfortunately, with the opposed results: the animals exhibited a disease exacerbation. This shows us that there is lot to learn for us to understand the human immune system completely. For today, the recommendation for patients suffering from lupus is that they all should pick up their vaccines record card and discuss with their primary doctors and their lupologists their vaccination status and its improvement. Protection is far better than suffering from infections that may activate your lupus or may be lifethreatening. Prof.med Matthias Schneider

5 CARING & SHARING WINTER 2009 Page 5 Promise of a New Lupus Treatment is a Groundbreaking Achievement BENLYSTA Successful in Second Pivotal Clinical Trial Human Genome Sciences (HGS) and GlaxoSmith- Kline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA). Both trials demonstrate that treatment with BENLYSTA plus standard of care was superior to that of placebo (inactive agent) plus standard of care. BENLYSTA significantly reduced disease activity. If approved by the FDA, BENLYSTA would be the first drug ever developed and approved specifically for the treatment of lupus. Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) issued the following statement. "We are truly excited to receive this groundbreaking news! Individuals with lupus and their families have waited more than 50 years to hear that it is possible to develop therapies that control the disease. We believe that this is a significant first step in developing the full arsenal of therapies and personalized treatment lupus requires. "Conducting clinical trials in lupus has been extremely difficult due to many factors including the heterogeneity of the disease, the selection of appropriate clinical trial endpoints, and the confounding role of required background medications given to clinical trial participants. Human Genome Sciences and GlaxoSmithKline have proven that these barriers, while formidable, can be overcome. labor are starting to emerge. However, now is not the time for complacency. We must band together for lupus and continue to capitalize on the decades of research made possible through the efforts of the many dedicated researchers, physicians, people with lupus, and advocates. "This announcement by HGS and GSK and the Overcoming Barriers to Drug Development in Lupus report, commissioned by the Lupus Foundation of America to outline recommendations on ways to overcome the barriers to lupus research, combine to serve as a call to action for a national coordinated effort to accelerate the pace of discovery, to develop more tolerable and effective treatments, and to ultimately find a cure for this perilous disease. "We congratulate HGS and GSK on reaching this important milestone in lupus research and in the development of new therapies for lupus. We also extend our appreciation to the researchers and study volunteers who made this achievement possible: the physicians who have passionately committed to researching this disease, and the companies that continue to invest in finding new and necessary treatments for this devastating disease." The next step in the process is for HGS and GSK to submit marketing applications in the United States, Europe and other regions during the first half of The LFA will closely follow this process, and continue to keep its constituents apprised of developments. With acknowledgement to LUPUS FOUNDATION OF AMERICA "For decades the entire lupus research community has worked hard to better understand the causes and consequences of the disease. The fruits of that

6 CARING & SHARING WINTER 2009 Page 6 Spotlight on. GRUPPO ITALIANO LES Founded in 1987 by a few patients, our association is at present quite a strong group with approximately 3600 members. We have lost a few members in the last two years, however, the drop-off has been almost completely compensated by new subscriptions. Interest among our members has been noticeably waning and they have become less active; we re trying very hard to encourage and convince them to attend regularly and to help out. Our association has been operating for 20 years, providing Lupus sufferers with reference, support and assistance. Our goal is to help all sufferers know and experience they are not alone. The regular meetings we hold are important for those members, whether affected by the illness or not. Our members believe in the power of being united and in the effectiveness of participating in self-help groups; self-help consists of sharing their life experiences in order to exchange mutual support and information; and to help each other cope -- through solidarity and understanding-- with this disease. Lupus manifests itself in various ways and with different symptoms in each person affected. It is perceived as extremely peculiar by the rest of the world, which is still so inadequately informed about it. Increasing patients awareness of their rights is indeed one of our priorities: our mission has always been to provide helpful information leading towards a better quality of life and to create a network of solidarity. OUR ACTIVITIES doctor-patient meetings, organised with the collaboration of professors from several universities, providing regular updates on the latest medical and scientific information, on therapeutic protocols and on new drugs currently available to treat Lupus self-help groups (art therapy counselling and psychological support) fund raising activities to support new research programs phone helpline (toll free) patients can call for psychological and medical support OUR INFORMATION SOURCES two internet fora website with information on SLE and news on the Group s activities quarterly magazine (ICARO) with research and treatment updates Guides for Patients and Nurses Posters, bookmarks and leaflets We have two regular events on our calendar: On May 10th World Lupus Day is observed every year. This all-important event allows us to focus global attention on the disease. Regional Groups promote conventions, doctorpatient meetings, and distribute leaflets and gadgets in different cities throughout Italy. Every year the month of October is entirely devoted to raising public awareness about Lupus. Several events mark the awareness month of October, both on a national and regional level: SLE information posters are placed in pharmacies and Continued on next page

7 CARING & SHARING WINTER 2009 Page 7 Continued from previous page in many public transport vehicles; we distribute African violets, flowers which are the symbol of our national association, in the main Italian city squares; a number of doctor-patient meetings are hold in major Italian hospitals; and we grant interviews which result in short articles that appear in the press. In 2008 we finally benefited from the special law, passed in 2006, which allowed Italian taxpayers to turn over 0.05 of their taxes to non-profit organizations. This additional funding allows us to finance the following: Two scientific research projects on LES Financial support designated for the instruction and qualification of young doctors. Financial support to encourage the participation of young doctors, who wish to attend the International congress on Lupus, that will take place in Vancouver, Canada on June 24 27, Support for the lupus clinisc that are already developing in Rome, Genoa and Florence. Our agenda includes the following initiatives: With the collaboration of GP s, we are planning to produce GUIDELINES FOR SLE AND OTHER SEL- FIMMUNE DISEASES in an up-to-date edition, accessible to as many Italian health care professionals and consultants rooms as possible; and promote CME events for GP s and educational events to inform citizens on a regional and national basis. Augusta Canzone Continued from page 1 LUPUS EUROPE in the European medical spotlight. The Convention in Strasbourg had a very good attendance and, in spite of the underlying sadness, delegates were able to share enjoyable times, such as the Reception given by the Mayor of Strasbourg at the Town Hall, and to take part in a Funding Workshop with ideas and information on fund raising which could be applied to all member countries as well as to LU- PUS EUROPE. Superb support has been given to LUPUS EUROPE throughout the year by, amongst others, UCB Pharma and Think Consulting Solutions, Hoffmann La Roche, X-Site and Netrics, Merck Serono and Phase ll. Without the support of these companies, and others, LUPUS EUROPE would not have been able to progress so far during the past year. The coming year promises to be very exciting. EULAR takes place in Rome during June and, during the same month, the 9th World Lupus Congress will be held in Vancouver, Canada. Hopefully, LUPUS EUROPE will have a presence at both. I wish everyone involved with LUPUS EUROPE a Happy Christmas, a Peaceful New Year and a Healthy Yvonne Norton Chair If you judge people, you have no time to love them Mother Teresa Continued from page 3 As EULAR took place in Denmark, the LUPUS EUROPE stand was shared with Lupus DK. Next year the Congress will be held in Rome and, hopefully, if funding can be secured for LUPUS EUROPE to attend, the Italian Lupus Group, FeLupus, will help share stand duties. If you have the opportunity to attend a future EULAR Congress, grab it with both hands. The information you can pick up and the contacts you can make, not just from Europe but countries worldwide, are amazing. I am so glad that LUPUS EUROPE was able to make connections with the two pharma companies who made attending the 2009 EULAR Congress in Copenhagen possible and I am thrilled that we were able to help lupus have such a high profile. Yvonne Norton

8 CARING & SHARING WINTER 2009 Page 8 LUPUS EUROPE TRUSTEES Back row Anthony M. Bonello Communications Advisor, Nele Caeyers Secretary, Kirsten Lerstrom Vice-Chair, Peter Norton Treasurer, Brian Hanner Projects Advisor since resigned and Fatima Maria Lavoll Conventions Manager Front row Prof.med Matthias Schneider Medical Advisor, Yvonne Norton Chair and Simone-Muller- Pretis Trustee LUPUS EUROPE MEDICAL ADVISORY PANEL As part of the Strategic Plan, LUPUS EUROPE has established a Medical Advisory Panel. The 5 eminent Lupologists so far enrolled as Medical Advisors are: Prof Med dr Matthias Schneider (Germany) Co-opted Medical Advisor to LU- PUS EUROPE, Prof Schneider is head of the Panel. Prof David Isenberg (UK) Well known in the lupus-world, Prof Isenberg was Chair of the Lupus Symposium at EULAR, Copenhagen. Prof Caroline Gordon (UK) Prof Gordon has expert knowledge on lupus in pregnancy and leads the first LUPUS UK Centre of Excellence. Dr Ricard Cervera (Spain) Dr Cervera is Head of the Department of Autoimmune Diseases, Hospital Clìnic, Barcelona. Dr Dimitrios Boumpas (Greece) Dr Boumpas leads research into lupus at the University of Crete, Greece All 5 members of the Medical Advisory Panel are keen to help and support LUPUS EUROPE in any way they can. They all send their best wishes to all member countries and to all readers of Caring & Sharing. 21 st ANNUAL CONVENTION 22 nd 26 th September 2010 BUDAPEST HUNGARY The Trustees and Members of LUPUS EUROPE extend their thanks to The Gabriella Schopper Hungarian Lupus Society

9 CARING & SHARING WINTER 2009 Page 9 At the convention this year it was a very special pleasure to be able to announce that we will actually soon have an updated web site for LUPUS EUROPE and also that this is based on a solution that should ensure our presence on the Internet for the coming years in a feasible way for all. The story about our web site goes back to 2005, where some of us pointed out that the then ELEF homepage was not presentable, did not offer the information necessary to present the group and the cause, and neither provided the image needed for an umbrella organization operating in Europe. It took some years to bring the consensus to accepting a development and with our new name, new logo and new board structure by September 2008; it was time to look forward. Our new name and logo was updated as part of the Lupus Europe rebranding project. The new website was supported by grants from both Roche and the agency X-site both based in Basel, Switzerland. Since July 2009 we have been spending time and effort getting the design plan and functionalities clear what should be done and what can be done given the budget and resources allocated to this project. It was presented in September at the convention in Strasbourg. In November it was incorporated into the CMS and we finalized structure and began filling content all the text and pictures to be presented. Then unfortunately the computer of our main contact crashed and the next three weeks were lost trying to find a substitute and a solution to a problem (to avoid us being in the same situation again in the future). We do not want to be in a position to rely on one person only for this important work. After all we are an organization based on volunteer work of people with Lupus! The launch date has been pushed back by one month to the end of December due to the holidays. Our special need for having a closed community service set up (members of board, project and other teams) will be postponed until further notice. But given the set up arranged now, we will be able to do the adjustments and developments necessary for our daily operations by ourselves from now on. Great big steps! It has been great following this project from the start till now. Our members have been urging this for a long time; it s fantastic to be able to present the web site soon. Please feel free to check it out and give us some constructive feed-back (please remember we re amateurs and volunteers, so do not expect miracles!). Simone Müller-Pretis & Kirsten Lerstrøm The LUPUS EUROPE Board of Trustees extends SEASON S GREETINGS to the Chairpersons, delegates, members, families & friends of all National Groups and wishes them a HAPPY CHRISTMAS and a PROSPEROUS NEW YEAR

10 CARING & SHARING WINTER 2009 Page 10 January February March April May June July August LUPUS EUROPE 2009 HIGHLIGHTS Became member of European Patients Forum Became member of SPECTRUM Started work on Strategic Plan - Brussels Set up and funded by UCB Trustee meeting held in Dusseldorf Name change from ELEF to LUPUS EUROPE registered with the Charities Aid Foundation (CAF) Vice-Chair attended Funding Information Day in Luxemburg Vice-Chair attended EPF Annual General Meeting and Conference with the European Commission regarding the outcome of the Phamaceutical companies. Produced artwork, letterheads, NEWS FLASH, CARING & SHARING and base Power-point slides Sponsored by Roche. EPF Written declaration on Health Literacy forwarded to member countries, asked to contact MEPs for signatures. EPF RESPECT survey completed (Dr.Michael Beresford). EPF Green paper on the European Workforce or health - comments made EPF Patient lobby on Annual Research LUPUS EUROPE Yes EPF call for Partners or Public Health Programme - LE No EPF Response to the Commission s Consultation on EU Action to reduce Health Inequalities excellent paper, comments made EPF Open letter on Economic Crisis and Health by the EU Health Policy Forum (EUHPF) no comment needed by LE. IAPO Counterfeit Drugs LE in agreement with IAPO response. IAPO European Commission activities on Patient Safety - LE in agreement with IAPO response. IAPO - Request to participate in Tool Development Survey for Patient Engagement and Surgical Safety LE No Merck-Serono agreed funding for Trustee meetings/website, leaflets, etc. LES Romania formed IAPO- Request to attend Patient Advocates Engaging effectively with the health policy agenda a the World Health Assembly (WHA) in Geneva. WORLD LUPUS DAY Most member countries held a special event, e.g. family day, Lupus Talk, LUPUS UK instigated mass text/ which was taken up by several countries.germany had a butterfly postcard project. Brian Hanner Project Adviser attended IAPO AGM in London. Trustee Meeting in Copenhagen LUPUS EUROPE at EULAR.Congress in Copenhagen Stand, Information Satellite Symposium - Lupus Considering the Future Trustee Meeting in Copenhagen Presentation LUPUS EUOPE AT EULAR to APPG for Lupus, House of Commons, London - Yvonne Norton EPF Code of Practice between Patients Organizations and the Healthcare Industry - LE signed up ARMA/EULAR Meeting in London. Attended by Yvonne and Pete Norton EPF Policy Advisory Group Agreed not to be part of this Group Funding Information Seminar, Wolverhampton UK Attended by Peter Norton Meeting with Dr. Kathryn Jones, De Monfort University, Leicester UK Pan-European Patients Organization Yvonne and Peter Norton attended Vice Chair attended meeting in Basel re proposed website with Roche and X-site Trustee Report and Accounts 2008 filed with Charity Commission Death of Krisztina Hever (Hungary) announced Death of Rudi Hocks (Vice-Chair LUPUS EUROPE) announced September LUPUS EUROPE Annual Convention held in Strasbourg FRANCE, hosted by the National Group France AFL+

11 CARING & SHARING WINTER 2009 Page 11 THE 20 th ANNUAL CONVENTION in pictures Sightseeing in Strasbourg By day 9 th 13 th September 2009 Strasbourg FRANCE By night

12 CARING & SHARING WINTER 2009 Delegates in session Page 12 Sweden, Norway, Cyprus, Spain Ireland, Malta, France The Netherlands, Hungary Belgium Germany, Switzerland, Ireland, Malta Medical Lecture Workshop Vision of a Lupus patient Photos by Nele Caeyers

13 CARING & SHARING WINTER 2009 Page 13 Ineke Boomker thanked for her services as a Trustee of LUPUS EUROPE Town Hall Reception at the Mayor s Office Meet and Greet Our hostess replying to the Mayor s address The Mayor s Guests Photos by Nele Caeyers At the Church Concert

14 CARING & SHARING WINTER 2009 Page 14 DELEGATES ATTENDING THE 20 th ANNUAL CONVENTION National Delegates Trustees Balazi Henrietta Hungary Bonello Yvonne Malta Cassoe Tove Denmark Christoforou Chrystala Cyprus Daly Caroline Ireland Fancesczko Anna Hungary Feriel Bouabida France Hamon Andree France Krismer Britta Switzerland Kroustalis Ioannis Belgium Kruithof Marja The Netherlands Marthszeki Ilonia Hungary Osborne Marcelle France Riviere Marianne France Rubio Blanca Spain Thoren Greta Sweden Volf-Philippot Ginette France Bonello Anthony Malta Boomker Ineke The Netherlands Caeyers Nele Belgium Hanner Brian United Kingdom Lavoll Fatima Norway Lerstrom Kirsten Denmark Muller-Pretis Simone Germany Norton Peter United Kingdom Norton Yvonne United Kingdom Schneider Matthias Germany Countries not represented Finland, Iceland, Israel, Italy, Portugal and Slovenia Number of Delegates: 27 Number of Countries: 14 Total Number of LUPUS EUROPE Members: 20

15 CARING & SHARING WINTER 2009 NATIONAL REPORTS BELGIUM (Flemish) Page 15 Nele Caeyers We continue to work with different autoimmune conditions and also provide meetings all over Flanders almost every week to give people the opportunity to meet and share experiences. We celebrated World Lupus Day on a big scale where once again we came together at the sea coast in Ostende. With some circus artists we paraded along the beach with blue and white umbrellas with the WLD logo, drawing attention of all. A similar celebration took place in Antwerp. Our magazine took a new look this year. The layout and design are much better, still not using too much colour but retaining a high level of content. The website will be changed shortly. We now have a new webmaster which we hope will solve many problems. Our new challenge was the first Rheumatology Conference held on 11 October for patients in Flanders which was an exciting day with lots of lectures and exhibits. DENMARK Tove Cassoe and Kirsten Lerstrom The new set up for stronger ties between regional groups has grown stronger and we now enjoy great exchange of ideas and support when running our projects. We are also able to include the new generation which will take over when the old ones retire. Although our financial resources are rather limited we decided to celebrate our 15 th anniversary, organized two World Lupus Day events with success where we met patients and relatives, friends and specialists and other health professionals in this field. Through a sponsorship from the Danish Rheumatology Society we were able to send six of our members to participate in the EULAR Congress held in Copenhagen. From the grant by our Danish Rheumatology Association (the patient group) we were able to pay the registration fee for another four members, thus having 10 members taking part. This experience took its toll on us all but we were in full agreement that it was worth the pain and effort. Again this year, we were invited to give a presentation of being a Lupus patient to a group of 100 scientists at Novo Nordisk, who are now working on finding better treatments for people with Lupus. FRANCE LUPUS Ginette Volf-Philippot It is difficult to sum up all the activities of our Group which has gone up from 40 in 1999 to 1200 members this year. We will therefore outline our objectives. The first objective and main mission is to INFORM. Our documentation, written by the best specialists, is valued not only by the patients but also by the general practitioners who have less experience of Lupus. The provision of a telephone information line has been an experience which led us to reflect on our role.which is that of directing individuals towards the best possible care. Information meetings with doctors are held as frequently as possible. The second objective is that of changing behavior. A well informed sufferer and a well informed family are in a better position to understand the need to establish a relationship of trust with their doctors. The third objective is underlined by sociological research on associative life. Conscious of the importance of joining forces and finding common causes we co-organized a major convention on auto-immune diseases which brought together four national referral centres and twenty associations. Finally comes research. With our limited funds we decided to join forces with the Arthritis Foundation which supports a variety of projects. Nonetheless we continue to support smaller research projects which are less costly but no less important. Finally we try to fulfill our national remit within the Alliance of Rare Disease by influencing and participating in Health policy making.

16 CARING & SHARING WINTER 2009 Page 16 NATIONAL REPORTS FRANCE AFL+ Marianne Riviere We continue to work and defend the rights of patients of Lupus in our country and this is done throughout the whole year. Since our last meeting our activities kept on developing. The demands from our members, patients and doctors are becoming more important. We have been greatly accredited for our competence by the Ministry of Health for this since The governance of CISS Lorraine is vey important as this keeps our relations with the public service, medical and social professionals on a high level. GERMANY Simone Muller-Pretis The long-term study (LuLa) is performed by our association in co-operation with the Department of Rheumatology and is now in its 8 th year. In 2006, the WHO chose Lupus to specify the ICF scores that refer to an international classification of functional abilities, disabilities and healthfulness. We succeeded in getting patients into this study that is usually reserved for physicians. The first astonishing results show that some disabilities have to be considered in different ways like fatigue, reduced productivity, pain, increased number of pauses necessary etc. The Lupus prevention passport was distributed in December. Patients are now able to evaluate their own risks and reduce preventable risk factors causing artheriosclerosis which is one of the main causes of death in lupus patients. We participated in numerous events throughout Germany promoting the European Day of Chronic Rare Diseases. By we communicated with all German members of the European Parliament on the risk of energy saving lamps for lupus patients in order to postpone the voting on these regulations until a safer possibility is found. On World Lupus Day we released 40,000 balloons representing this number of Lupus patients in Germany Our project Lupus Crossing was a great success having received 288 butterfly-related postcards from 40 countries conveying support for lupus patients worldwide. HUNGARY Zoltan Purgel We held a patient s forum on three occasions where renowned doctors participated. These were recorded and distributed on DVDs. World Lupus Day was a great success this year when patients from all over the country gathered in Budapest spending the whole day organizing quiz shows, exhibitions and shows performed by Lupus patients. This also gave us the opportunity to collect a significant amount of money which will be used to support our future plans. At the end, we were able to launch a book, translated into Hungarian, called Hundred most important questions about Lupus, written by the English Professor Dr. Graham Hughes. Our Butterfly magazine will also be published at the end of the year. Our website, registering 40,000 downloads per month also features around 20 hours of video which can be accessed by our registered members. We register our grief at the death of Krisztina Hever, Vice-Chair and international contact of our Group who departed this world at the age of 34 after loosing the battle against Lupus. She lost the hard and painful fight on 20th August She will be missed by all those who knew her and her memory will always remain with us. An award is being established in her memory.

17 CARING & SHARING WINTER 2009 Page 17 NATIONAL REPORTS IRELAND Caroline Daly We continue to provide support for our members by organizing support meetings on a local and regional basis. Our president May Feehan has represented us at some charity functions when we were fortunate to be recipients of sponsorships this year. The controversy on CF light bulbs continues and we keep on lobbying our MEPs on this matter. To date there has been no concession at all on this matter. One of our members, whose final year course was a treatise on Anti phospholipids Syndrome has allowed us to publish her work in booklet form and this was launched last September. We participated in an open day as a member of the Genetic and Rare Disease Organization and we also attend the Irish Platform for Patient Organization in Science and Industry conference on clinical research with a view to enabling members to benefit from any opportunities that may arise from them in that field. As always we appeal to new volunteers to enable the group to continue its work. ITALY Augusta Canzone We continue working hard to provide Lupus sufferers with reference, support and assistance, and to increase patients awareness of their rights. Such work includes:- Doctor-patient meetings are organized with the collaboration of professors from several universities, and these provide regular up-dates on the latest medical and scientific information, Therapeutical protocols and news drugs available. Self-help groups for art therapy counseling and psychological support. Telephone helpline for free support to patients. Two internet fora with information on SLE and the Group s activities Publication of a quarterly magazine (ICARO) and the booklet Guides for Patients and Nurses, posters, bookmarks and leaflets. Last year we benefitted from a special law which allows taxpayers to contribute over 0.05 of their taxes to nonprofit organizations. With this money we were able to finance two scientific research projects on SLE, support for the instruction and qualification of young doctors, assistance to attend Lupus congresses and support for lupus clinics On WLD we participated in press conferences, distributed leaflets and held doctor-patient regional meetings. During October Awareness Month we had spots on regional television, handed out information leaflets and posters in hospitals and distributed Saint.Paula African Violets for fundraising. MALTA Ian Lochhead This year we were wondering whether our functioning as a Group was worthwhile. We had few members attending and very little feedback. We sent out a questionnaire and the result was quite surprising. It appeared that our members do appreciate what we do and do not want to stop. We received the information pack regarding the European Parliamentary campaign regarding support for the Declaration on Health Literacy. We wrote to our MEPs and they promised to support it. On World Lupus Day we held an afternoon tea party and organized related publicity on TV and daily newspapers. Later in the year one of our members gave us a talk on Feeling Good and also invited a local celebrity chef to give us a demonstration on Cake decorating The Secretary was interviewed by a local newspaper and the result was a double page article on Lupus in the Sunday edition.

18 CARING & SHARING WINTER 2009 Page 18 NATIONAL REPORTS THE NETHERLANDS Ineke Boomker We held a two-day meeting with an expert in order to brainstorm and eventually draw up a policy plan. With the result the Committee has drawn up a long range plan on which basis we can work more efficiently. Our intention is to meet yearly and evaluate the situation. A general members meeting will be held once a year featuring an attractive programme. A professional website developer was enlisted and a new website is now in place. For World Lupus Day we produced and distributed a poster which has been sent to all hospitals. Another poster including a bookmark was distributed in main libraries We also organized a WLD puzzle contest for our members and also the general public, making use of our website for this purpose. This year s NVLE Award was won by Dr. MC Vonk for his research called Systemic sclerosis, assessment and treatment, tight control in a tight disease Having found a news and cheaper printer we now intend to publish our quarterly magazine in full colour. NORWAY Fatima Maria Lavoll We have finally been able to organize World Lupus Day on the 9 th May in Oslo with a full day meeting where five doctors, a pharmacist and the Board took part. Together with Rikshospitalet we arranged two 2-day Lupus patient schools with lectures and workshops. This was very successful and another one is in the pipeline. Last April, I was able to visit the main office of the Lupus Foundation of America for a few days and took part in Walk for Lupus in Washington DC where about 2000 people took part. We publish our magazine every quarter and this is sent by mail or . We have a new website which is updated regularly and also include an active forum. For the future we have to finance our World Lupus Day celebrations and other projects, such as our bi-annual conference in March next year where we can elect a new board of directors. At present we have 770 members in 15 national groups. SPAIN Blanca Rubio Founded in 1996, the Federation now has 22 associated members all over the country. It has been the website Administrator of the Internet Based Spanish Patients Registry with SLE and Primary Anti-Phospholipid Syndrome. We also coordinated the participation of 76 physicians and 20 associations in the project since We celebrated WLD by organizing a National Lupus Congress in Malaga where we gave information on people with Lupus and distributed our book Autoimmune Disease: The Inside Enemy We publish our magazine every six months and have also actualized our website in which we receive more than 20,000 visits per month. We continue with our national toll-free phone to help lupus patients in Spain. Through these calls they can obtain information on resources and how to improve their situation as well as how to contact their nearest Lupus association. We are also preparing a National Lupus Awareness Campaign with announcements in the press, radio and television.

19 CARING & SHARING WINTER 2009 Page 19 NATIONAL REPORTS SWITZERLAND Britta Krismer Founded in 1987, counting 546 members in 7 regional groups, our Association has 4 contact persons who deal with issues and enquiries raised by members. We have recently changed our Statute to elect a president serving more than 5 years and we still are without our Vice-President. We lost some of our Board members due to illness thus weakening our management capacity considerably. However we still managed to have two medical presentations although we had to cancel our patient workshops due to lack of participation. We publish our magazine in German and French, four times a year and we have our own website linked to each regional group. This is available in German, French and Italian. We celebrated World Lupus Day by newspaper information and interviews on radio and television. We work closely with Swiss Rheumaliga from whom we get a lot of support. Together we also run selected projects on a national scale. With the help of Dr Hauser we started an SLE Cohort Study early this year. It is a Swiss multicentre study which should give a basis to other Lupus studies. We intend to continue in this way, increasing information about Lupus all over the country and further improve our management organization. UNITED KINGDOM Yvonne Norton Our work has continued during the past year to promote and raise awareness to Lupus both to the medical profession and the general public whilst also reaching out to patients. We also continued to support medical research into the causes and consequences of lupus and improved medications. The All Party Parliamentary Group met representatives from the Department of Environment for an update on the proposed changes in EU light regulations Fundraising for research this year reached a record 650,000 The majority of large hospitals now have Lupus Clinics and there are also 3 Lupus Drop-in Clinics Two Lupus Centres of Excellence in Birmingham and Manchester continue to give very high standard of care to patients We continue to publish our magazine NEWS & VIEWS three times a year and update our website regularly. Several national magazines have covered lupus stories during this year, however national newspapers continue to be difficult to reach. Our membership is around 6000 paid up members, and approximately one third now pay heir subscription by a bank direct order. Lupus Awareness Month and World Lupus Day were both successful when special posters and stickers were produced and displayed. Members also sent text messages to publicize World Lupus Day. We had a very successful year but there is still work to be done. We continue to work in many areas to ensure the availability of information to patients and the public at large. CYPRUS Andreas Pantelli At the beginning of this year the Group elected a new Chairperson and a Secretary. A new logo was designed by a volunteer graphic artist and a pin was created by a well known jeweler. This was sold on WLD to raise much needed funds. We celebrated World Lupus Day at a restaurant where members and their families participated in a workshop Positive Thinking led by a specialist psychotherapist. Here it was decided that instead of saying I have Lupus we would say I entertain a butterfly. The Group sold pins for the first time during this special function. To raise further awareness we sold and distributed posters, bookmarks and leaflets from a central outlet in Nicosia.

20 CARING & SHARING WINTER 2009 Page 20 LUPUS PASSPORT LUPUS PREVENTION PASSPORT A project of the German Lupus self-help association At the end of 2008 the German Lupus self-help association started one of its most prestigious projects, the Lupus Prevention Passport. Prevention and Lupus? Seems impossible? Not at all! LUPUS PASSPORT Emergency and Prevention LUPUS PREVENTION PASSPORT Of course, nobody is able to prevent against an autoimmune disease like Lupus. However, prevention against one of the most lethal diseases with lupus patients, arteriosclerosis, can easily happen. Your first idea might be... Prevention against LUPUS? Arteriosclerosis is one of the most frequent comorbidities with lupus patients, as its risk is about 40 times higher for lupus patients than for non-lupus patients. Besides bacterial infections, arteriosclerosis is one of the most common causes of death with lupus patients. Impossible! However... Prevention against severe comorbidities LUPUS PREVENTION PASSPORT Fighting against this life-threatening side effect of Lupus has been the starting point for the project Lupus Prevention Passport of the German Lupus Association. In its Prevention part, the Lupus Prevention Passport makes it easy to find one s own risk out by using a traffic light logic (red/yellow/green). It raises awareness for the risks of arteriosclerosis and helps patients to reduce their risks steadily by motivating them to pronounce own goals. with lupus patients? Possible and even crucial! Raising awareness for... LUPUS PREVENTION PASSPORT Prevention against the most common lethal disease with lupus patients: Arteriosclerosis Prevention against the side effects of lupus treatment: Osteoporosis Active prevention can be realized by stopping smoking, reducing overweight, cholesterol and hypertension, stabilizing one s diabetes and starting (or intensifying) physical activity. Actually, a lupus patient is capable of enhancing the quality of his life on his own, and to prolong lifetime, by preventing or reducing above risks and managing other diseases resulting of lupus treatment like osteoporosis. On request of our members who have contributed enormously to the realization of the Lupus Passport, the project team has also integrated a part for Emergency data as well as the possibility of collecting blood parameters and medication details. Continued on next page

21 CARING & SHARING WINTER 2009 Page 21 EMERGENCY & PREVENTION LUPUS PREVENTION PASSPORT Arteriosclerosis Risk for lupus patients is about 40 times higher than for non-lupus patients The most frequent comorbidity with lupus patients One of the most common causes of death with lupus patients besides bacterial infections But not only individual benefits can be obtained by using the Lupus Passport. A study about the successful prevention thanks to the passport will be launched. Upon patient s approval, data will be linked to data of the German LuLa study (biggest study among patients in Europe about long-time course of lupus), so that further findings on Lupus can be documented. Arteriosclerosis LUPUS PREVENTION PASSPORT Being convinced about the long-term benefit for the public health care, the German Ministry of Health supports the Lupus Passport project to a great extent. - Smoking - Overweight - Cholesterol - Hypertension - Diabetes - Lack of physical activity - Family predisposition Risks Osteoporosis LUPUS PREVENTION PASSPORT At the end of 2008, the Lupus Passport was distributed to all members of the German Lupus self-help association including a first medical questionnaire. This questionnaire is being evaluated at the moment, while the second questionnaire has been dispatched recently. Since the beginning of November 2009, the questionnaires can be filled in online and are subsequently analyzed. A comparison with previous results shows the progress of one s individual prevention efforts or may encourage participants to intensify them. Higher risk for lupus patients due to - Protection against sunlight and - Cortisone therapy Contents Prevention part: using a traffic light logic (red/yellow/green): easy way to find one s own risk out LUPUS PREVENTION PASSPORT Emergency data as well as possibility of collecting blood parameters and medication details => on request of our members On the occasion of the Annual Convention 2009 of Lupus Europe in Strasbourg, the secretary of the German Lupus self-help association presented this project to her colleagues of the European lupus associations. Due to the enormous interest, the German Lupus group was thinking about an international version of the Lupus Passport. Today, we are pleased to let you know that the second edition comprises an English translation and will be released in shortly. Other languages are also being considered. For further information, please contact Simone Müller-Pretis Secretary Lupus Erythematodes Selbsthilfegemeinschaft e.v. simone.mueller-pretis@lupus-rheumanet.org

22 CARING & SHARING WINTER 2009 Page 22 IN MEMORY OF OUR DEPARTED ONES It is with deep regret that we record the death of two of our members, a delegate and the Vice Chair of LUPUS EUROPE, which happened a week from each other. Krisztina Hever another Butterfly in Heaven Rudi Hocks remembered with great love and affection Krisztina Hever passed away on Thursday 20 th August Rudi Hocks Vice Chair of LUPUS EUROPE died on Thursday 27 th August She had been in hospital for many weeks then she was moved from Intensive Care onto a Ward and was responding to treatment. Hopes were lifted that Krisztina was on the road to recovery. Sadly this was not to be she lost her valiant fight against Lupus. Those who attended last year s Annual Convention will remember Krisztina for her great enthusiasm for the lupus cause. Indeed she was the force behind Hungary being chosen to host next year s LUPUS EUROPE Annual Convention and she had already visited hotels and made arrangements for this annual event to take place in her home country. She will be greatly missed by all those who knew her but memories of love, joy and fighting spirit which she had in abundance will help ease the heartache that so many will be feeling at her loss. LUPUS EUROPE sends deepest sympathies to Krisztina s and Rudi s families, friends and members of their respective Groups. Just five days before he had returned from a 3- week holiday in the South of France with his dear wife Karin and his sudden death came as a total shock to everyone. Rudi touched the lives of so many people involved with LUPUS EUROPE, the German Lupus Group and other Lupus organizations, mainly the Lupus Federation of America. He was widely-travelled in the cause of lupus and if his name was mentioned at any lupus gathering, almost anywhere in the world, someone would say they knew him. Whether they be lupus patient, a doctor or a pharmaceutical company representative, they all knew Rudi and admired his commitment to supporting lupus patients. As Vice-Chair of LUPUS EUROPE he showed a dedication beyond the expected and could be relied upon to complete any task requested of him to the highest level. Rudi will be missed so much by all who knew him but the memories that everyone will have of him will keep his spirit alive May they rest in peace

23 CARING & SHARING WINTER 2009 Page 23 LUPUS EUROPE TRUSTEES Chairperson Yvonne Norton 8 Legge Lane, Coseley West Midlands WV14 8RQ United Kingdom Tel/Fax: yvonne@wmlg.freeserve.co.uk Vice Chairperson Kirsten Lerstrom Elmely 19,2 nd DK-3520 Farum Denmark Tel: kirsten@ledrstrom.dk Secretary Nele Caeyers Bresserdijk 75 B-2400 Mol Belgium Tel/Fax nele@reumanet.be Treasurer Peter Norton 8 Legge Lane, Coseley West Midlands WV14 8RQ United Kingdom Tel/Fax: peternorton@bulldoghome.com Conventions Manager Fatima Maria Lavoll Bekkeveien 11 N-9667 Oslo Norway Tel: flavoll@online.no Trustee Simone Muller-Pretis Weg zum Sportplatgz 4 D Wurtzburg Germany Tel: simone.mueller-pretis@lupus-rheumanet.de Communication Advisor Anthony M Bonello 202/6, Tower Road Sliema SLM 1602 Malta Tel/Fax: ambonello@hotmail.com Medical Advisor Prof. Dr. med. Matthias Schneider Heinrich-Heine-University Department of Rheumatology D Dusseldorf, Germany Tel: schneider@rheumanet.org Address St James House, 27-43, Eastern Road, Romford, Essex RM1 3NH, United Kingdom Telephone Fax Mailing Address 8, Legge Lane, Coseley, West Midlands WV14 8RQ, United Kingdom elef@rheumanet.org For more information visit EULAR website: Register Nele Caeyers Website Manager Simone Muller-Pretis Have you got your copy yet? Contact the Treasurer 5 Euros a copy