EUROPEAN LUPUS ERYTHEMATOSUS FEDERATION

THE NEWSLETTER OF ELEF – WINTER 2007 A MESSAGE FROM THE CHAIRMAN
Dear Friends, It is a nice custom, already for a few years that the Chairman’s message gives you an overview of the important points which got a chance and the related achieved results. This year, the Annual Convention was hosted by the German Lupus Group and we gathered in the interesting town of Mainz near the river Rhine. The combination of the professionally run business sessions, the medical lectures at the university and the sightseeing part leaves us all with nice memories. I am sure that all delegates can join me in thanking the German colleagues for their excellent preparation and the good organization. Business-wise ELEF has decided about some important points which lead towards a future continuation with experienced trustees on board. I am referring to the changes in the constitution where 2 trustees are elected each year. In this rotational scheme all trustees are elected over a period of 3 years. A few other proposed changes were also accepted. We are pleased that Yvonne Norton (UK) accepts to (still) be the ELEF’s Charities Commission Representative. In regards of these changes elections took place for Vice-Chair and a Trustee. Rudolf Hocks (D) was confirmed Vice-Chair and disappointingly enough, there was no nomination for a Trustee and hence no election. Fortunately, Marianne Rivière (F) accepted to be co-opted as a Trustee. The Projects Advisor Brian Hanner did an excellent job by having the Management Guidelines (Manual) workable and he is very keen in bringing up strategic options in relation to future projects which ELEF really needs. One of these projects is the ‘Common Cause Project’ introduced by Prof. Matthias Schneider and promises have been made to work it further out. Another one which also looks very promising is related to the EULAR Recommendations. A volunteer group is working this project out. During the medical talks, from a point of view of the medical community as well as from the pharmaceutical industry, gave us new insights in the development of examinations and therapies. I cannot deal with all topics right now. You would have received the minutes of the Annual Convention so please, read them carefully. I am convinced that we had a very fruitful meeting. The future is interesting and I can already give you the news that the pharmaceutical industry, on a European level, has accepted an ethical code by which the relationship with patient organizations is structured in a constructive way. You shall definitely hear more about it early next year. I would like to sincerely thank all Members of the Board, as well as the Observers, for their dedication and their constant care. A very special thank you, I would like to give to Tony Bonello for his work as Secretary and the special efforts he puts into compiling Caring & Sharing. Can I end this message by wishing you all the best for the year to come? It is that time of the year again, when you are thankful for everything merry and bright. May this Christmas be a delight! Wishing you a Merry Christmas and a Happy 2008! Jean-Paul Sanders

UNITING PEOPLE WITH LUPUS ACROSS EUROPE
ST. JAMES HOUSE, EASTERN ROAD ROMFORD, ESSEX, RM1 3NH, UNITED KINGDOM REGISTERED CHARITY NO. 803768 Member countries: Belgium, Cyprus, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Israel, Italy, Malta, The Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, United Kingdom

CARING & SHARING – WINTER 2007

SECRETARY’S REPORT
During this year, meetings of ELEF Trustees were held on 20/21 January in Düsseldorf, 22 April in Zandhoven and 30 June/01 July in Düsseldorf . Two more meetings were also held here in Mainz on the 12th and 15th September 2007, before and after this Annual Convention. The Minutes of meeting of Trustees and the Annual Convention Minutes have been e-mailed to all National Groups. For the January and June meetings, the Trustees invited four “observers” to attend. Nele Caeyers (Belgium Flemish), Fatima Lavoll (Norway), Kirsten Lerstrom (Denmark) and Blanca Rubio Hemendez (Spain) attended. Fatima Lavoll could not attend the June meeting whilst Yvonne Norton was asked to participate as adviser on amendments to the ELEF Constitution. These five “observers” participated fully in the discussions and their input was very much appreciated. The January meeting, spanning over two days, discussed a wide variety of subjects ranging from Fundraising, Membership, Representation on similar bodies, Development of closer liaison with the European Union, Improvement in programme content and quality during our Conventions to the Completion of a Management Manual and the Future of ELEF. Valuable suggestions were made by the five “observers” and working papers on a variety of subject were produced. The April meeting was held to fine-tune the subjects brought forward and discussed with the four “observers” during the January meeting, and to discuss further proceedings regarding the agenda for the June/July meeting. Our last meeting was held in Düsseldorf between Saturday 30 June and Sunday 01 July 2007. This meeting continued the previous meetings’ discussions, including updates to our website, Convention agenda, ELEF Ambassador and Constitution and a report on the Shanghai Conference. The Convention Agenda and the Supplementary Comments are the result of these meetings of Trustees and the valuable participation of the five “observers” at these meetings. Delegates had the opportunity of discussing further and voted on these subjects during this Annual Convention. As a result we have amended the ELEF Constitution and gave a start to a new website. If and when our finances improve, action will be taken on the other subjects discussed at the Convention. At our next Annual Convention in September 2008, two officials will step down and their post will become vacant. The Chairman and the Secretary have already given notice and it is now up to all National Groups to nominate suitable candidates to fill these two important positions on the Board of Trustees. Such nominations will be made some months before the Annual Convention and appropriate notice will be sent to all Groups. In the meantime it would be wise to keep this in mind and to start, discussing these appointments on a National level. ELEF COMMON CAUSE Your participation is VERY IMPORTANT. Give us your feedback in the insert at the back and see “A word from our Medical Advisor” on page 6.

Anthony M Bonello

TABLE OF CONTENTS
A MESSAGE FROM THE CHAIRMAN _________________________________________________________ 1 SECRETARY’S REPORT _____________________________________________________________________ 2 YVONNE NORTON AWARDED THE MBE______________________________________________________ 3 GOING BANANAS!!! ________________________________________________________________________ 4 A WORD FROM OUR MEDICAL ADVISOR _____________________________________________________ 6 MEDICAL REPORTS FROM THE ANNUAL CONVENTION 2007 __________________________________ 7 BORGI WINKLER-ROHLFING HONOURED____________________________________________________ 9 BE MET BY RESPECT! _____________________________________________________________________ 10 BUTTERFLY TRAVELLER __________________________________________________________________ 10 PICTORIAL SUPPLEMENT _________________________________________________________________ 11 NATIONAL REPORTS 2007 _________________________________________________________________ 15 EUP4 – NEW REGULATIONS FOR ALL LIGHTING ____________________________________________ 20 IN A LIGHTER VEIN…… ___________________________________________________________________ 21 TRUSTEES _______________________________________________________________________________ 23 ELEF INTERNATIONAL CONTACTS_________________________________________________________ 24 ELEF COMMON CAUSE__________________________________________________________________ insert

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YVONNE NORTON AWARDED THE MBE

Yvonne was very honoured to be told in confidence from the Prime Minister’s Office that she was to be invested at Buckingham Palace by the Queen with the MBE, Member of the Order of the British Empire “for services to healthcare”. The announcement was made on January 1st in the Queen’s New Year Honours List published in national newspapers. Yvonne herself reports: “On the morning of Wednesday 23rd May we drove from our hotel to Buckingham Palace, in through the main gates in some style. With me were husband Peter and sons Calvin and Kieron with his wife Carly. A steward was waiting at the Choirmaster’s Door and whisked me off to the lift to the Picture Gallery so avoiding the Grand Staircase. I next saw my family about an hour later when I was taken through the Ballroom (where the guests are seated) to another Gallery pending the announcement of my turn to move forward. The Queen, wearing a lovely beige dress, was very gracious and it was apparent that she knew something about lupus. After fixing the Award to my jacket and having a short conversation with me, the Queen shook my hand gently and the steward wheeled me out of the Ballroom. My medal was removed from my jacket and returned to me in a presentation box along with a souvenir booklet listing the names of that day’s recipients of awards. From there I was taken to the back of the Ballroom from where I was able to watch the rest of the Ceremony. Following the National Anthem (a small orchestra had been playing before and during the awards) the Queen walked between the rows of guests, past where I was sitting and out of the Ballroom, all the time wearing a wonderful smile. Following a photo session in the Palace courtyard we drove to the House of Commons where MPs and Lords were waiting on the Terrace for a champagne reception overlooking the river. I was thrilled to receive a massive flower arrangement and the congratulations of all those present. The weather was glorious and I could not have wished for a better day which ended with a family meal on the journey home. I was so grateful to friends, members of the West Midlands Lupus Group, medical consultants and Members of Parliament who had lobbied in support of my Award over three years. My special thanks went to Jannet Angus (friend and WMLG Committee Member) and my son Kieron who both worked hard to make the Award possible”. Congratulations from all of your friends and acquaintances throughout the European Lupus fraternity on your richly-deserved honour, Yvonne !

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GOING BANANAS!!!
The well known expression might actually derive from the effects of bananas.
PMS: Forget the pills – eat a banana. The vitamin B6 it contains, regulates blood glucose levels, which can affect your mood. ANAEMIA: High in iron, bananas can stimulate the production of haemoglobin in the blood and so helps in cases of anaemia BLOOD PRESSURE: This unique tropical fruit is extremely high in potassium yet low in salt, making it perfect to beat blood pressure. So much so, the US Food and Drug Administration has just allowed the banana industry to make official claims for the fruit’s ability to reduce risk of blood pressure and stroke. BRAIN POWER: Two hundred students at a Twickenham (Middlesex UK) school were helped through their exams this year by eating bananas at breakfast, break and lunch in a bid to boost their brain power. Research has shown that the potassium-packed fruit can assist learning by making pupils more alert. CONSTIPATION: High in fibre, including bananas in the diet can help restore normal bowel action, helping to overcome the problem without resorting to laxatives. HANGOVERS: One of the quickest ways of curing a hangover is to make a banana milkshake, sweetened with honey. The banana calms the stomach, and with the help of the honey, builds up depleted blood sugar levels, while the milk soothes and re-hydrates your system. HEARTBURN: Bananas have a natural antacid effect in the body, so if you suffer from heartburn, try eating a banana for soothing relief. MORNING SICKNESS: Snacking on bananas between meals helps to keep blood sugar levels up and avoid morning sickness MOSQUITO BITES: Before reaching for the insect bite cream, try rubbing the affected area with the inside of a banana skin. Many people find it amazingly successful at reducing swelling and irritation. NERVES: Bananas are high in B vitamins that help calm the nervous system.

Never put your bananas in the refrigerator! Read on…..
Bananas contain three natural sugars - sucrose, fructose and glucose combined with fibre. A banana gives an instant and substantial boost of energy. Research has proven that just two bananas provide energy for a strenuous 90-minute workout. No wonder the banana is the number one fruit with the world’s leading athletes But energy is not the only way a banana can help us keep fit. It can also help overcome or prevent a substantial number of illnesses and conditions, making it a must to add to your daily diet. DEPRESSION: According to a recent survey undertaken by MIND amongst people suffering from depression, many felt better after eating a banana. This is because bananas contain tryptophan, a type of protein that the body converts into serotonin, known to make you relax, improve your mood and generally make you feel happier.

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Going Bananas! …cont./…
OVERWEIGHT and at work?. : Studies at the Institute of Psychology in Austria found pressure at work leads to gorging on comfort food like chocolate and crisps. Looking at five thousand hospital patients, researchers found the most obese were more likely to be in high pressure jobs. The report concluded that, to avoid panic-induced food cravings, we need to control our blood sugar levels by snacking on high carbohydrate foods every two hours to keep levels steady. ULCERS: The banana is used as a dietary food against intestinal disorders because of its soft texture and smoothness. It is the only raw fruit that can be eaten without distress in over-chronicler cases. It also neutralizes over-acidity and reduces irritation by coating the lining of the stomach. TEMPERATURE CONTROL: Many other cultures see bananas as a “cooling” fruit that can lower both the physical and emotional temperature of expectant mothers. In Thailand, for example, pregnant women eat bananas to ensure their baby is born with a cool temperature. SEASONAL AFFECTIVE DISORDER (SAD): the natural mood enhancer tryptophan. Bananas can help SAD sufferers because they contain

SMOKING AND TOBACCO USE: Bananas can also help people trying to give up smoking. The B6, B12 they contain, as well as the potassium and magnesium found in them, help the body recover from the effects of nicotine withdrawal. STRESS: Potassium is a vital mineral, which helps normalize the heartbeat, sends oxygen to the brain and regulates your body’s water balance. When we are stressed, our metabolic rate rises, thereby reducing our potassium levels. These can be balanced with the help of a high-potassium banana snack. STROKES: According to research in The New England Journal of Medicine, eating bananas as part of a regular diet can cut the risk of death by strokes by as much as 40% ! WARTS: Those keen on natural alternatives swear that if you want to kill off a wart, take a piece of banana skin and place it on the wart with the yellow side out. Carefully hold the skin in place with a plaster or surgical tape. So a banana is really a natural remedy for many ills. When you compare it to an apple it has four times the protein, twice the carbohydrate, three times the phosphorus, five times the Vitamin A and iron, and twice the other vitamins and minerals, It is also rich in potassium and is one of the best value foods around. So maybe it is time to change that well-known phrase to “ A banana a day keeps the doctor away!” P.S. Coming to think of it Bananas must be the reason why monkeys are so happy all the time! Just one more…. Do you want a quick shine on your shoes? Then take the INSIDE of a BANANA SKIN and rub directly on the shoe…then polish with dry cloth.

A TRULY AMAZING FRUIT !!!

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A WORD FROM OUR MEDICAL ADVISOR
In every situation with great room for improvement, men dream that the progress will happen like an explosion. There is no doubt that there is enough space for development in a lupus patient’s life. The vision is cure for lupus, but an improved quality of life, a normal life with lupus, is what most of my patients hope to get with the new drugs in the pipeline. Even if that expectation is not really guaranteed by the actual new medications currently under investigation, the disappointment is huge with any unsuccessful trial. In 2007, again no new drug was licensed for lupus and no international multicentre trial was successfully finished. The first fruitful trial design in lupus will be the breakthrough. For that, your continuous support in participating in trials is absolutely necessary. In the last year’s issue of Caring & Sharing, I presented the first European Recommendations for the Management of SLE to you. The good news is that EULAR is going to continue this important process by starting with more detailed recommendations for e.g. lupus nephritis and by transferring the existing general recommendations into a version for patients. ELEF will be the EULAR partner in developing these first EULAR guidelines for patients. As mentioned, the experts identified during the developing of the guidelines at least as many unanswerable questions as topics they could clearly respond to on the basis of clinical trials and other evidence based experiences. The lupologists prepared a long but still incomplete list of these unsolved problems. I asked you last year whether you, the patients, may come up with your own needs, or even better with your number one topic – the one question, project, idea or trial that has to be answered, done, followed or performed. In response to this idea I was asked to specifically indicate what I had in mind. First of all for me the most important aspect of this idea is the process itself and not any result that may come out of it (and I promise that I still have no specific result in mind). Why may such a process be so important for patients with lupus? 1. The lupologists identified topics and questions in very different areas of lupus that should be addressed. They perform their research mostly for your benefit. Therefore it will be of great help for them to get support from you concerning your preference on research projects. They may become new ideas from your views and may benefit in focusing their research projects. 2. Can you imagine the power of the one major topic all lupus patients in Europe have agreed on? Such a task is an extremely powerful basis to get funding for a project by the European Community. 3. Most important is the communication of all lupus patients in Europe in such a process. It will start on the very basis of the lupus support groups in the different European countries, the local and regional groups. They will begin the process by exchanging their ideas and questions that all have in mind. Their thinking is guided by their personal experiences, their wishes and hopefully their dreams. At first, most important will be the open, unbiased discussion of all items that are mentioned, nothing in this exchange is really correct, nothing truly wrong, because the matter to discuss is one of the future. No one knows what will really happen, but a vision may happen. Secondly, in this group process the regional groups have to agree on their one most important topic that should be solved. I hope the groups spend at least some weeks to work out their idea, topic, and question …. The local groups send their final results to their chair board, which then starts its own process of identifying their one most relevant issue out of the topics coming from their local groups. Afterwards the chair board will reflect their ranking back to the regional groups to strengthen the shaping of the most important topic of the country. The whole nationwide process should be accompanied by publications and other open communications, e.g. in radio and TV. After the selection of the country specific topics these will be collected on the European level. ELEF will rank all incoming topics, questions and ideas and reflect the result back to the participating countries. This process will certainly come up with the most relevant issue for lupus patients in Europe. Whatever it may be, it will surf on a wave of power and energy that is raised from the process itself. Finally, all lupus patients in Europe will speak with one voice, and ELEF will use the power of all patients with lupus to get support to solve the raised issue. The researchers can focus their research on patients’ preferences, which may shorten the time that is needed for patients’ benefit from research. You may use this project to support yourself.

Prof. Dr. med Matthias Schneider

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MEDICAL REPORTS FROM THE ANNUAL CONVENTION 2007
Belimumab: A potential New Approach to SLE (Lupus) Treatment
Abstract of the presentation at the Convention 2007 of ELEF in Mainz, Germany blood cells called monocytes and it can bind to one of 3 receptors expressed on B cells. BLyS promotes B cell survival (inhibits programmed cell death) and maturation of B cells to plasma cells that produce antibodies which are important to the body’s first line of defense against infection. Elevated BLyS levels in lupus subjects correlate with increased SLE disease activity and autoantibody production. B-cells and autoantibodies have been demonstrated to be important in the development of a variety of autoimmune diseases. A large 52 week phase 2 clinical trial of belimumab with an optional extension has been performed in North America. The primary objectives were to evaluate the efficacy and safety of belimumab plus standard of care (SOC) versus placebo plus SOC. A total of 449 patients with active SLE were randomized to receive one of three different doses of belimumab (1, 4 or 10 mg/kg) or placebo administered intravenously over a 52-week treatment period. The 52-week results demonstrated that belimumab significantly reduced disease activity versus placebo in patients with serologically active SLE (a large subgroup of study population) across multiple secondary clinical measures of SLE disease activity. In addition, improvements in subject quality of life (QOL) were observed as well as clinically relevant biological activity as evidenced by reduction of autoantibodies and selected B cell subsets. Belimumab was generally well tolerated as frequency and severity of adverse events and lab abnormalities were similar to placebo, with no increase at higher doses. Among the findings at Week 52 was a significantly improved response rate in serologically active patients, as defined by an improvement in SELENA SLEDAI score of 4 points or greater, no new BILAG A flare and no more than one new BILAG B flare, and no worsening in Physician’s Global Assessment (46% for belimumab versus 29% for placebo, p<0.01). This combination of measures is the primary efficacy endpoint in the ongoing pivotal Phase 3 clinical trials. Two global phase 3 double-blind, placebo controlled, multi-center superiority trials, BLISS 76 and BLISS 52; have been initiated in North America, Europe, Latin America and Asia Pacific. Each of these studies will evaluate the efficacy, safety and QOL of belimumab in combination with SOC versus placebo plus SOC in the treatment of approximately 810 patients with active SLE.

Dr. William Freimuth Vice president Clinical Research, Human Genome Sciences, Inc. Rockville, USA Challenges in lupus drug development include: 1. Validation of SLE disease activity scales as clinical endpoints; 2. Pathway to regulatory approval; and 3. Logistics of performing large international trials. Draft regulatory guidance on lupus drug development has been recently issued by the US FDA in 2005, which focused on measurement of disease activity and clinical outcomes within pivotal clinical trials. Opportunities for development of new lupus agents include: 1. Major unmet medical need; 2. No drugs approved specifically for SLE in >30 years; and 3. Increased interest within the clinical, academic and patient communities. Clinical development of new therapeutic agents involves: 4 phases of clinical trials, clinical trial protocol, subject selection criteria, study assessments, safety monitoring, compliance with international good clinical practices and evaluation and approval of new drugs by regulatory agencies. Expectations of a biopharmaceutical company and subjects considering participation in a clinical trial of a new lupus therapy were summarized. Lupus advocacy groups can further support development on novel SLE drugs by educating members on nature of clinical trials, providing support and educational materials on SLE and engaging in discussions with rheumatologists and health authorities about lupus drug development. Belimumab is a fully human monoclonal antibody that selectively targets and inhibits the biological activity of soluble B Lymphocyte Stimulator (BLyS). BLyS is produced primarily by a subset of white

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Link to the BLISS study:
www.bliss-study.com (see previous report on page 7)
This website was developed to give SLE patients the opportunity:     To get general clinical study information To get initial information regarding the BLISS studies To search for hospitals that are specialised in SLE and conduct the trials close to their home or work To decide if they want to be contacted by a hospital regarding participation in studies

Psychiatric, psychological and MRI-examinations in patients with SLE Preliminary data
Neuropsychiatric involvement occurs frequently in SLE (prevalence up to 75%) and is one major burden of the disease. Respective pathomechanisms and interacting factors have not been entirely elucidated yet. Beyond the interrelation of neuropsychiatric symptoms and molecular factors (e.g. antibodies), psychological parameters (e.g. coping or depressivity) probably play an important role.

The aim of this prospective study is to investigate the association of cognitive dysfunction, psychiatric disorders and structural brain alterations in SLE patients with and without overt neuropsychiatric manifestation. In all, 40 consecutive SLE patients and 37 matched healthy controls agreed to participate in the study, which includes two examinations with a follow-up period of 18-20 months.

Preliminary results show that patients with SLE were significantly more depressed and suffered from significantly more pain than healthy controls. Furthermore pain interference with daily activities correlated significantly with depressive symptoms. Quality of life was significantly reduced in both physical and mental health in patients. This decrease was again associated with depressivity. In this study patients with SLE showed no cognitive deficits in attention, psychomotor performance, memory and executive functions. These first analyses highlight the interaction between mood, pain and quality of life in patients with SLE. In contrast to literature the total group of SLE patients showed almost no cognitive deficits. Detailed subgroup analyses of the patients with SLE and analyses of the relationship between neurocognitive and affective symptoms and structural brain alterations will be performed in the next months.

Mag. rer. nat. Ingrid Schermuly

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BORGI WINKLER-ROHLFING HONOURED
Borgi Winkler-Rohlfing, Germany receives the award for exceptional voluntary public service from the State of North Rhine-Westphalia

Borgi Winkler-Rohlfing accepting this highest Award of the State of North Rhine-Westphalia in Germany on 20th March 2007 from Prime Minister Juergen Ruetgers In his laudatory speech the Prime Minister said a State needs people who are engaged in the world of self-help organisations and who are able to build new networks for those people who are in need of help. Borgi has served for more than 10 years as the Chairwoman of the German Lupus Organisation. Under her leadership the Organisation has grown from 1100 Members to almost 3000 Members. Borgi is always available when lupus patients are in need of advice or need to find a specialist in the area where they live. For 7 years she has been a member of the board of the German Rheuma League and 2 years ago she was one of the founders of ACHSE, the organisation for rare diseases, and continues to serve as a member of the board. Her great expertise in the field of self-help is sought by various organisations and NGOs. She is greatly involved in health care, always having in mind the welfare of lupus patients.

Congratulations from all member organisations of ELEF on your well deserved honour Borgi!

THE ELEF ANNUAL CONVENTION 2008
The 19th ELEF ANNUAL CONVENTION will be held in the Spanish capital MADRID between the 10th and 14th September 2008.
The Trustees and Members of ELEF extend their thanks to our Spanish hosts

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BE MET BY RESPECT!
Be – to be able to juggle all the daily hassles of prioritising when limited by lack of energy, loss of concentration, physical disabilities and mental obstructions, and yet find deep pleasures in the beauty of nature and nourishment in the shift of seasons. Met – to feel the great depth of understanding and love when you interact with peers, struggle and overcome new faces of your disease, and can acknowledge the true intention of people trying to make your world feasible and sustainable. By – to really understand you are not alone; we are something together, and together we make things work for us to have a better place Respect – to find yourself accepted among others on your own reports, whether in a wheelchair or through the comings of a vital tool, such as electronic help, personal aid or just being able to perform as you did “when belonging” to the society as a person. Actually this is about belonging to a society as a whole person, with integrity, resources and spirit

Be met by respect – Let’s all have a chance.

Kirsten Lerstrøm

BUTTERFLY TRAVELLER
A Multilingual Medical Phrase Book for the International Traveller

HAVE YOU ORDERED YOUR COPY YET?
NO?…
…then contact our treasurer (contact details on page 23)

Limited number of copies available at 15 Euros, postage paid

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PICTORIAL SUPPLEMENT

MAINZ – ELEF CONVENTION CITY 2007
18th Annual ELEF Convention 12th September – 16th September 2007
HOTEL IBIS

MAINZ, GERMANY
All Photographs courtesy of Rudolf Hocks 11

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PICTORIAL SUPPLEMENT

Convention in session

Farewell dinner

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PICTORIAL SUPPLEMENT

Tour of the old City of Mainz

Cruising down the River Rhine

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PICTORIAL SUPPLEMENT

DELEGATES ATTENDING THE 18Th ELEF CONVENTION IN MAINZ, GERMANY th 12 SEPTEMBER – 16th SEPTEMBER, 2007
Bonello Yvonne, Malta Caeyers Nele, Belgium (Flemish) Canzona Augusta, Italy Diaz Isabel, Spain Feehan Mary, Ireland Hamon Andrée, France Krismer Britta, Switzerland Lange Karsten, Germany Lerstrøm Kirsten, Denmark Marchioni Francesca, Italy Muller-Pretis Simone, Germany Norton Yvonne, United Kingdom Number of delegates: 22 Rasmussen Hanne, Denmark Rivière Marianne, France Toledo Maria, Belgium (French) Winker-Rohlfing Borgi, Germany Trustees Bonello Anthony, Malta Boomker Ineke,The Netherlands Hanner Brian, United Kingdom Hocks Rudolf, Germany Norton Peter, United Kingdom Sanders Jean-Paul, Belgium Number of Countries: 11

Countries not represented: Cyprus, Finland, Hungary, Iceland, Israel, Norway, Portugal and Sweden

TOTAL NUMBER OF ELEF COUNTRIES: 19

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NATIONAL REPORTS 2007

NATIONAL REPORTS 2007
BELGIUM (Flemish)
In the latter part of last year we celebrated our 25th Anniversary with medical lectures in the afternoon and a musical programme in the evening – a combination of information and culture appreciated by all present. This year was once again an eventful one. We celebrated Myositis Day in April where we got television coverage for this event. We attended the Lupus Conference in Shanghai and also participated in a biking event where doctors and patients cycled together from Brussels to the EULAR Conference in Barcelona. Next year the cycle run will take us to Paris. Our groups in the five provinces continue to work together by organizing activities, information sessions and social gatherings. Our new booklet “Guidelines for CTD patients” has been printed and distributed. We continue our hard work by providing the best information towards our patients in Flanders through leaflets, meetings, the internet, our magazine and various international contacts. Nele Caeyers

BELGIUM (French)
In June 2006 we celebrated our 15th Anniversary with three major lectures given by Profs. Michel Goldman, Profs. Frederic Houssiau and Mr. Doliveux respectively. Partnerships between patients, universities, medical research sector, politicians and the pharmaceutical industry together with presentations on radio and television were given importance. Improvements for patients included healthcare of higher quality and re-imbursement of medical expenses by chronic disease sufferers We participated in the traditional “20km de Bruxelles” in May, “La route de l’espoir” Brussels to Barcelona in June and “Le Beau Velo de Tavel” touristic travel around the country where doctors, patients and family friends participated. We also took part in a medical training session at the ULB and attended a Congress on “Lupus in children and teenagers” during September. Prior to the elections in May, our President Anne Marie Verbeek participated in a Health Commission in the Senate to evaluate wishes and needs of patients. Maria Toledo

DENMARK
This year could easily be named “Growth Year”. Besides our monthly meetings in the two largest cities, we have also had meetings in other parts of the country and tried to launch some new ideas. The South Group held a meeting where relatives and family friends discussed the influence of daily life when living with chronically ill Lupus patients. More such initiatives are planned for the future. The East Group organized a special session of music therapy for Lupus sufferers. The biggest event of the year was again our celebration of World Lupus Day. A very good turnout at Copenhagen and Arhus conventions with super lectures and some very interesting results. Our first article on Lupus was published in one of the leading weekly magazines in Denmark. Kirsten LerstrØm

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NATIONAL REPORTS 2007

FRANCE AFL+
Since our last Convention in Bergen, we continued with our care for Lupus patients, support and collaborations with the medical and administrative sectors, We have participated in numerous conferences and congresses both in France and in Europe. We now have around eight hundred members and we distribute around one thousand copies of our magazine to members and friends. We are proud that ELEF has chosen our city of Strasbourg for its 20th Annual Convention in September 2009. Marianne Rivière

GERMANY
This year we have introduced the” Lupus Prevention Pass” – a booklet containing information on the disease, when first diagnosed, prescribed medicine, allergies to certain medications and information on the patient. There is a three month evaluation period after the pass has been issued to the patient. Our organization has this year supported the LuLa study – a ten year study solely financed by our Group to the amount of Euros 60,000 per year. Another study, also supported by us is the ICF study, financed by WHO on the day-to-day problems of Lupus patients. In this study 225 lupus patients took part. As a non-governmental organization we participate on a non-governmental committee on the Health reform system where we are able to influence some of the decisions taken. This is hard work and time consuming for our Chairperson. This year we had an increase in membership which is now nearing three thousand. Our finances are fortunately quite good and as the economic situation improves we hope that this will have a positive effect on our bank balances. Our homepage has been redesigned and being “barrier free” is a big help to our disabled members. Rudolf Hocks

IRELAND
Since we launched our website last Autumn we have noted that the amount of calls at our office has decreased as people are now using our website for information. Participation in a Trade Show for the medical profession gave us the opportunity to liaise with other groups in the exhibition to the benefit of all parties. We organised sponsorship events to raise funds, updated some of our leaflets and backdrop for meetings and a member of our Group allowed us to use her thesis on APS in leaflet form for the benefit of the Group. Senator Mary White is lobbying the Minister of Health to acknowledge Lupus as a long term illness, which recognition would result in financial disability entitlements. Our representative on GIDO reports that they are formulating guidelines on informed patient’s consent for participation in drug trials in tandem with EURORDIS. Mary Feehan

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NATIONAL REPORTS 2007

ITALY
Our Association has been operating for the last 20 years providing sufferers with reference, support and assistance. Our goal is to help them know and experience that they are not alone. Regular meetings are held in which members believe in the power of being united and with the effectiveness of participating in self-help groups, exchange, mutual support, information and help each other cope with the disease. Increasing patient awareness of their rights is indeed our main priority – our vision has always been to provide information leading towards a better quality of life and create a network of solidarity. Two regular features on our calendar are World Lupus Day which allows us to focus on global attention of the disease and the Month of October which is entirely dedicated to raising public awareness of SLE. With the collaboration of GPs, we are producing “Guidelines for SLE and other self-immune diseases” in an updated edition, accessible to as many healthcare professionals and consultants, on a regional and national level. Augusta Canzona

MALTA
Our main concern this year was the very low turn-out to meetings and fund-raising activities by our members and we now depend on the financial support of people who do not have Lupus. Raising funds has been from some of the members, a buffet supper and the traditional Easter baking function and some donations. We paid for a billboard during Lupus Awareness Month last October and had various publicity on radio and television interviews through the support of the charity Life Cycle Marathon which raises funds for the renal unit at our main general hospital. Dr Audun Myskja who was a guest speaker at our Convention in Bergen, was brought over to Malta in April this year. He gave two talks on Music and Healing. Again, we had fewer people than we had hoped for although paramedics and health-care people showed the greatest interest. The Committee meets once a month and every other month we organize a lecture on a variety of subjects for our members. Lectures on subjects of a general interest are also open to the public at large. Ian Lochhead

THE NETHERLANDS
We started this year without a Chairman who resigned for personal reasons. Later on, our Secretary also resigned but we have since moved into a new office sharing the space and Secretary with the NSVP. We have a new glossy magazine, published four times a year, a new logo, new editorial staff and also a new Chairperson Marja Kruithof. We have also renewed our website and included a special page for the younger generation. Our Board also has two new members and in April 2008 we will also have a new Secretary Janneke van den Heuvel. Ineke Boomker

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CARING & SHARING – WINTER 2007

NATIONAL REPORTS 2007

NORWAY
We have had good activity in our Group last year. The NRF opened a help line “NRF is helping You” – a new and important offer to rheumatic patients all over the country. We have a similar Lupus helpline but on a smaller scale. We send our four issues of Lupus News which is also published on our website. A Lupus CD and Lupus information booklet with many updated articles is being sold to health professionals and patients. A Lupus wristband is also being sold generating a good income for our Group. Our Chairperson attended an ELEF Trustees meeting as an “observer” in January, the 8th International Lupus Congress in Shanghai in May and the WHO Patients for Patients Safety Workshop in Dublin in September 2007. Fatima Maria Lavoll

SPAIN
Founded in 1996, the Federation now has 21 associated members all over the country. We celebrated World Lupus Day by organizing our 6th National Lupus Congress in Santiago de Compostela in Galacia where we gave information about psychological, social and health problems to people with Lupus and their families. Around 350 people attended and the Congress was also broadcast. We joined the World Lupus Steering Committee to design material to be used by Lupus Groups around the world for a unified event to highlight WLD 2007. We attended the 8th International Lupus Congress in Shanghai and we have been a member of the Lupus Leaders Forum organised by the LFA there in China. Our latest project is our national free telephone help-line through which people can obtain the information about the necessary resources to improve their situation as well as to contact persons of their nearest Lupus association. Isabel Diaz

SWITZERLAND
The year 2007 was an important one for our organization as we celebrated our 20thAnniversary. Special events were organized with the aim of informing the public about our objectives. A new logo was introduced. At the Annual General Meeting in Lucerne, we welcomed more than 60 new members and we now total over 500 members all over the country. After the meeting, a lavish dinner with entertainment was offered while the Swiss Rheumaliga sponsored the anniversary gift. We organised two medical presentations which took place in two different hospitals participation being on the same level as last year. Four times a year, a patient magazine informs all interested persons about the latest news whilst our website is very well visited. It also has a link to the ELEF webpage. The magazine is published in German and French and we intend to publish a flyer in Italian. At World Lupus Day we increase our activities. We visited hospitals and distributed information. We had interviews in newspapers, on radio and television to increase Lupus awareness. Our association is closely connected with the Swiss Rheumaliga which supports us in many ways. This is highly appreciated. Britta Krismer

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CARING & SHARING – WINTER 2007

NATIONAL REPORTS 2007

UNITED KINGDOM
On 1 January 2007, Jane Dunnage took over the role of Chair, replacing Ronnie Gourley who retired after 14 years at the helm. Jane brings her own personality to LUPUS UK and is gradually instigating changes and new ideas which are already changing various aspects and increasing the involvement of members and support for Regional Groups. We continue to raise funds to finance 11 research projects and 6 LUPUS UK Specialist Nurses in various hospitals. There are now 3 Lupus Open-Access (Drop-In) Clinics and more hospitals are setting up dedicated Lupus clinics where patients are seen because “they have Lupus”. A second LUPUS UK Centre of Excellence has been established at Manchester Royal Infirmary, joining the Birmingham Centre of Excellence. At National Conference, medical conferences, and annual meetings we take the opportunity of giving out a large amount of literature, in particular, the GP Guide and Nurses Guide. Information on research, events, meetings and photographs continue to be published in News and Views and on the website. A mini-website – Eclipse, the Light Sensitivity Support Group – is being set up. Our membership now stands at around 6500. The annual drop-out in members seems to be slowing down probably due to the use of Direct Debit (payment via Banks). Fundraising for research continues to be a large part of the work at the National Office. Regular contacts with Trust funds, companies, the London Marathon, the National fund raising event “Go That Extra Mile” and the Celebrity Butterfly Ball are the main source of income. 2007 has been another successful year but there is much more to be done in many areas and we will continue to do so for years to come. Yvonne Norton

SO YOU WANT THE DAY OFF !!!! Let us take a look at what you are asking for… There are 365 days per year available for work. There are 52 weeks per year in which you already have days off per week…… Since you spend 16 hours each day away from work, you have used up 170 days, leaving only 91 days available You spend 30 minutes each day on Coffee breaks, that accounts for 23 days each year, leaving 68 days available With another hour for lunch each day, you have used up another 48 days, leaving only 22 days available for work You normally spend 2 days per year Sick Leave. This leaves you with only 20 days available for work We are off for 5 holidays per year, so this leaves 15 days We generously give you 14 days Vacation Leave per year, which leaves only 1 day available for work and… I’ll be damned if you are going to take that day off !!! 19

CARING & SHARING – WINTER 2007

EUP4 – NEW REGULATIONS FOR ALL LIGHTING
Demand for better energy savings brings health costs to Lupus Patients
Products that use a lot of energy are now being investigated to find better solutions to improve costs and environmental impact. One of these products is lighting. Incandescent lamps as well as mains halogen lamps (low voltage halogens are not much better) are a very inefficient technology and great environmental benefit could be gained by a shift to lighting technology that is 4-7 times as efficient. The EU is planning to make a special Directive about light, so it will be required that all European countries use light sources as recommended. If we all – at home, at work and in the streets, would use only energy saving light sources, an improved cost of energy is presumed and lesser environmental impact is expected. The preliminary work to form this Directive on Domestic lighting has started recently – see further information on www.eup4light.net. This study will identify:

 Market characteristics for the products  Relevant environmental aspects of the products and their technical/economical potential for
improvement

 Existing relevant legislation  Self regulation by industry and standards  Needs for standards to be developed
Incandescent light and halogens are known to trigger attacks of Lupus and other diseases. Those of us who are subject to light sensitivity already know how important proper lighting is in the areas we have to be in – at home, at work, in the street and in public buildings. A new directive demanding use of incandescent and halogens would bring HELL to a lot of us. All artificial lighting will radiate UV. Most light sensitive people react at levels much lower than other people to UV lighting and many also react to the bluer end of the visible light spectrum (which is the lowest end of the visible light spectrum following the invisible UV radiation). Other people who are not abnormally sensitive to sunlight react to fluorescent lighting - some results indicate that it might be due to larger high frequency radiation in the microwave range. Some people with epilepsy also blame fluorescent light bulbs for causing symptoms. During July, Yvonne Norton, LUPUS UK, picked up information about the new directive and signed up ELEF as a stakeholder at once. Then we found out, that the work on the new directive is just commencing, so we had a good chance to let our voice be heard. The EU Project Team working on this had never heard of or even thought that regulating the use of energy saving light sources could have a grave impact on us – today about 300.000 people within Europe. The team was more than happy to know and learn of our special needs. Since July, we have been following the project, in particular under the care of LUPUS UK and Spectrum Alliance (www.spectrumalliance.org.uk) and the EuP4Light contact person regarding domestic lighting, Casper Kofod of Denmark. We will keep you informed of the results during the next year.

Kirsten Lerstrøm and Yvonne Norton

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CARING & SHARING – WINTER 2007

IN A LIGHTER VEIN……
By a hen-pecked husband
Wife: Husband: Wife: Husband: Q: A: Honey, what are you looking for ? Nothing ! Nothing !... You have been reading our marriage certificate for an hour ? I was just looking for the expiry date. What is the difference between a Mother and a Wife? One woman brings you into this world crying, the other ensures you continue to.

Wife: Husband: Wife: Wife: Husband: Wife: Husband:

Do you want dinner ? Sure…. what are my choices ? Yes or No. You always carry my photo in your wallet. Why? When there is a problem at the office, no matter how impossible it is, I look at your picture and the problem disappears. You see how miraculous and powerful I am for you? Yes, I see your picture and say to myself: “What other problem can there be greater than this one?”

Girl: Boy: Girl: Son: Mom: Son:

When we get married I want to share all your worries, troubles and lighten your burden. It’s very kind of you, darling, but I don’t have worries or troubles. Well, that’s because we aren’t married yet. Mom, when I was on the bus with Dad, he told me to give up my seat to a lady Well, you have done the right thing. But Mum, I was sitting on daddy’s lap.

Husband: Wife: Interviewer: Millionaire: Interviewer: Millionaire:

Darling, would you have married me if my father hadn’t left me a fortune? Honey, I’d have married you no matter who left you the fortune. To whom do you owe your success as a millionaire? I owe everything to my wife. Wow, she must be some woman. What were you before you married her? A Billionaire.

Girl: Boy: Wife: Husband:

One kiss and I’ll be yours forever Thanks for the warning !! What do you like most in me, my pretty face or my sexy body ? Your sense of humour.

Little boy: Father: Judge: Husband:

Dad, where did all my intelligence come from? Well, son, you must have got it from your mother, cause I still have mine. Mr. Clark, I have reviewed this case and I’ve decided to give your wife $750 a week. Quite fair your Honour. Occasionally I’ll try to give her a few bucks myself!

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CARING & SHARING – WINTER 2007

S-P-E-L-L-I-N-G
This is one of the cleverest e-mails I have received in a while. Someone out there either has too much spare time or is deadly at Scrabble. DORMITORY when you arrange the letters: DIRTY ROOM BEST IN PRAYER MOON STARER A ROPE ENDS IT THEY SEE HE BUGS GORE HERE COME DOTS CASH LOST IN ME IS NO AMITY LIES – LETS RECOUNT ALAS! NO MORE Z’S I’M A DOT IN PLACE THAT QUEER SHAKE TWELVE PLUS ONE

PRESBYTERIAN when you arrange the letters ASTRONOMER when you arrange the letters DESPERATION when you arrange the letters THE EYES when you arrange the letters

GEORGE BUSH when you arrange the letters THE MORSE CODE SLOT MACHINES ANIMOSITY when you arrange the letters when you arrange the letters

when you arrange the letters

ELECTION RESULTS when you arrange the letters SNOOZE ALARMS when you arrange the letters A DECIMAL POINT when you arrange the letters THE EARTHQUAKES when you arrange the letters ELEVEN PLUS TWO when you arrange the letters

Teaser: When you re-arrange MOTHER-IN-LAW what will it give you? This has, most probably, been invented by a Son-in-law with a lot of spare time on his hands! If you don’t succeed but are still curious, then Ask the Editor!!!

The ELEF BOARD OF TRUSTEES extends SEASON’S GREETINGS to the Chairpersons, delegates, members, families & friends of all National Groups and wishes them a Holy & HAPPY CHRISTMAS and a PROSPEROUS NEW YEAR!
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CARING & SHARING – WINTER 2007

European Lupus Erythematosus Federation
TRUSTEES Address: St. James House, 27-43, Eastern Road Romford, Essex, RM1 3NH United Kingdom Tel: +44-17.08.73.12.51 Fax: +44-17.08.73.12.52 ELEF TRUSTEES: Chairman, Jean-Paul Sanders Biotest Seralc° NV Essenestraat 16 B-1740 Ternat Tel: +32 2 756 07 41 Fax: +32 2 757 63 18 Email: jp.sanders@biotest.be Vice Chairman, Rudolf Hocks Johannes-Luth-strasse 33 D-65520 Bad Camberg Germany Tel: +49-64.83.80.44.77 Email: rhlupus@aol.com Secretary, Anthony M Bonello 202/6, Tower Road, Sliema SLM1602 Malta Tel / Fax: +356-21.31.13.10 Email: ambonello@hotmail.com Treasurer, Peter Norton 8, Legge Lane, Coseley, West Midlands, WV14 8RQ United Kingdom Tel: +44-19.02.49.82.36 Email: peter@wmlg.freeserve.co.uk Special Tasks, Ineke Boomker Niersstraat 12 5626 DW Eindhoven / Acht The Netherlands Tel: +31-40.26.23.509 Email sj.boomker@hetnet.nl Project Advisor, Brian Hanner 19 Keeble Park Maldon Essex CM9 6YG United Kingdom Tel: +44-16.21.84.27.82 Email: brian@hanner.org.uk Medical Advisor, Prof. Dr. med. Matthias Schneider Heinrich-Heine-University Düsseldorf Department of Rheumatology POB 10 10 07 D-40001 Düsseldorf Germany Fax: +49-21.18.11.645 Email: schneider@rheumanet.org

The Trustees meet in Antwerp in January, in Düsseldorf in June and immediately before and after the Annual Convention in September.

The ELEF website: www.elef.rheumanet.org
Website and ELEF Register Manager: Rudolf Hocks (Germany): rhlupus@aol.com

To contact ELEF by Email:
elef@rheumanet.org

CARING & SHARING
“Caring & Sharing” is the newsletter of ELEF, published in December each year. Articles are to be in English only and sent to the editor by the 15th October. Articles appearing in the newsletter do not necessarily reflect the opinions of ELEF, its officers or members. 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) Deputy Editor: Brian Hanner (brian@hanner.org.uk)

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CARING & SHARING – WINTER 2007

ELEF INTERNATIONAL CONTACTS
BELGIUM (Flemish) Nele Caeyers Bresserdijk 75 B-2400 Mol Tel/Fax +32-14.3223.99 Email: nele@reumanet.be BELGIUM (French) Maria Toledo Avenue Seghers 84 B-1081 Bruxelles Tel: +32-24.14.44.86 Email: maria.toledo@swing.be CYPRUS Marios Kouloumas P.O.Box 24966 Nicosia 1306 Tel: +357-22 42 82 85 Fax:+357-22 42 82 88 Email: cyplar@cytanet.com.cy DENMARK Kirsten Lerstrøm Kalundsvej 1 C DK-3520 Farum Tel +45-44-99 49 99 Fax:+45-44-99 40 99 Email: kirsten@lerstrom.dk

FINLAND Jaana Hirvonen The Finnish Rheumatism Association: Iso Roobertinkatu 20-22A FIN-00120 Helsinki Tel: +358-9 476.155 Fax:+358-9 642.286 Email: info@reumalitto.fi HUNGARY Timea Leitol Szt. Antal Streit 85 6500 Baja

FRANCE (AFL+) Marianne Riviere 34, rue Principale Lemestroffe F-57970 Ouderenne Tel: +33-82-55 09 23 Email:
riviere.marianne@wanadoo.fr

FRANCE (LUPUS) Ginette Volf-Philippot Rue de Rocroy 7 F-75010 Paris Tel/Fax: +33-1-45 26 33 27 Email:
presidente@lupusfrfance.fr

GERMANY Rudolf Hocks Johannes-Luth-Strasse 33 D-65520 Bad Camberg Tel: +49-6483-80 44 77 Fax: +49-6483-80 44 78 e-mail: rhlupus@aol.com

ICELAND Laufey Karlsdottir Lindarsmara 57 IS-201 Kopavagur Tel: +354-564-45 53 Email: laufey@gn.is

IRELAND Mary Feehan Carmichael Centre North Brunswick Street Dublin 7 Tel: +353-1-872 45 18 Fax: +353-1-873 57 37 Email: irishlupus@indigo.ie THE NETHERLANDS Ineke Boomker Nierstraat 128 NL-56260W Eindhoven / Acht Tel: +31-40-262 35 09 / +31-6-402-02-359 Email: sjboomker@hetnet.nl SWEDEN Kerstin Kallander Reumatikerforbundet P.O Box 128 51 119 98 Stockholm Tel: +46-8505 805 12 Email: kerstin.kallander@reumai kerforbundet.org

ISRAEL Geula Paz & Mazali Irit PO Box 9009 Ramat -Efal Tel: +972-2-535 03 76 Email: lupus@netvision.net.il

ITALY Augusta Canzona Via dei Monti Tiburtini 558 I-00157 Roma Tel: +39.32.82.36.77.46 Email: lupusroma@virgilio.it

MALTA Ian C. Lochhead St.Paul’s Garden Ix-Xwieki l/o Gharghur NXR 09 Tel: +356 21.37.02.34 Fax: +356 21.37 74.02 Email: elizian@malanet.net SPAIN Isabel Diaz C/Lagunillas, 25 Locales 3 y 4 E-29012 Malaga Tel/Fax: +34 952 25 08 26 Email: felupus@felupus.org

NORWAY Fatima Maria Lavoll Bekkeveien 11 N-9667 Oslo Tel: +47-22-75 81 56 Email: flavoll@online.no

PORTUGAL Dr. Rita Andrea Avenida Defensores de Chaves No,27. 4 Dto P-1000-110 Lisboa Tel: +351-21-330 26 40 Fax: +351-21-314 62 16 Email: associacao.lupus@clix.pt SLOVENIA (interim members) Marjan Hudomalj Parmova 53 Si-1000 Ljubljana Tel: +386-1-436 22 80 Fax: +386-1-236 24 57 Email: drustvo@revmatiki.si

SWITZERLAND Britta Krismer Bogenweg 15 CH-8620 Wetzikon Tel: +41-44-930 33 64 Email: b.r.y.kismer@bluewin.ch

UNITED KINGDOM Yvonne Norton 8 Legge Lane, Coseley West Midlands WV14 8RQ T/F: +44-1902 49 82 36 Email: yvonne@wmlg.freeserve. co.uk

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CARING & SHARING – WINTER 2007 – INSERT

INVITATION

YOUR LOCAL/NATIONAL LUPUS GROUP

LUPUS GROUP
 Name: __________________________________  Address: __________________________________ __________________________________ __________________________________ __________________________________
European Lupus Erythematosus Federation
ELEF is the common body for all European Lupus Groups. We meet in September at the ELEF convention. We aim to bring our cause to the attention of all relevant bodies and counterparts in Europe. Our Common Cause should bring forward the complexity of our disease to all relevant people and bodies. Our Common Cause project should bring both awareness and understanding to our cause throughout Europe. Our Common Cause should bring results of better care of our disease by providing improved knowledge of our problems and a clearer picture of our situation. Our Common Cause should show the differences in problems encountered on a daily basis by Lupus patients throughout Europe. Our Common Cause should also lead to new ways of solving some of the most important problems we currently face. For more information contact your national ELEF delegate – your country’s International Contact – or go to ELEF’s website for further information visit our website: www.Lupus-Europe.org

Uniting People with Lupus throughout Europe

ELEF COMMON CAUSE
Is there an issue which is of the highest priority in all countries and on which we can launch a unified campaign? This question arose on the basis of the newly defined EULAR Recommendations for Management of SLE in Europe – defined by doctors and to be implemented as standards for our health care. But what is OUR real issue? ELEF Medical Advisor, professor Matthias Schneider, asked this question in his article in the ELEF Caring & Sharing, winter 2006 “Management of Systemic Lupus Erythematosus – First Evidence-based Recommendations”. Prof. Schneider invites us to make this a special ELEF project - the one question, project, idea or trial that has to be answered and followed through. An issue like this should be an ongoing process. So we suggest that it will start locally, be gathered nationally and then collected internationally; A European Project. It is a fantastic project to be unveiled through a true evolutionary process - just like a butterfly – an egg, pupa, larva and full bloom … We can make this happen. So we start locally.

Contact details:

 Telephone: __________________________________ __________________________________  Email: __________________________________  Web site:
_________________________________

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CARING & SHARING – WINTER 2007

ELEF COMMON CAUSE – WHY?
All Lupus patients in Europe will speak with one voice. ELEF will use the power of the voice of all Lupus patients to obtain financial support to solve the raised issue. The researchers can focus their work on patients’ preferences, which may shorten the time needed for patients to benefit from research.



How? - at the Convention the discussion will lead to a decision on how to move further - what we should seek funds for and where the funds will come from: who will lead the project and organise promotional support. Topic No. 1 will define campaign to follow: o Will it be a campaign using merchandise (posters, leaflets, t-shirts etc.) to bring attention to our cause? Or will it be a question of communicating directly to officials and politicians with specific goals for research and/or social provision by letters or lobbying? Or will it prove to be the great task of bringing awareness to all through mass media campaigns? Or …?

RESPONSE SLIP
As a Lupus patient, what is the main topic (problem) that YOU would like ELEF to address? The one question, project, idea or trial that has to be answered and followed through:

Topic No. 1: ____________________________________ ____________________________________ ____________________________________

ELEF COMMON CAUSE – WHAT?
What issue could we agree upon - and what subject will truly unify our common cause?  At first, most important will be the open, unbiased discussion of all relevant issues, nothing in this exchange is really right, nothing is completely wrong Then the group locally and, later, nationally will have to decide on topic, idea or area of interest based on the arguments presented in the groups. The foremost problem as discussed nationally will be communicated internationally.

o

o

Why: ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________
Note: You can use the following blank page if you need more space. Feel free to include any comments
on this initiative.



o

 Follow-up – at the next ELEF
Convention. What worked and why, as well as what did not work?



ELEF Common Cause – WHEN?
 Initiated January 2007 by Prof. M. Schneider  Designed September 2007 at ELEF Convention
Mainz, Germany  To be presented to all ELEF members by end 2007  To be campaigned nationally in order to discuss topics and collect responses before or at the national World Lupus Day, May 10th 2008  Deadline July 1st 2008 for national responses to ELEF Secretary  Evaluation and final definition of project September 2008 – ELEF Project Advisor  Establishment of project group September 2008 ELEF Convention - to further formulate design to be communicated throughout Europe  Launch of campaign Spring 2009 throughout Europe.

ELEF Common Cause – HOW?
  What? – make this a topic at one of your gatherings. Who? – YOU submit your suggestion for the most important issue to be focused on. State your reasons why, if you want, or just return the slip with your topic to your local representative. Where? - the total presentation of important issues in each member country and the argumentation will be the topic for a workshop at the next ELEF Convention.

Member of (Local Lupus Group): _____________ To be submitted to your local group as noted on the reverse or sent by mail to your national group: Email-address@nationaldomain.XXX



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CARING & SHARING – WINTER 2007 – INSERT

Additional notes or comments (if required) on ELEF Common Cause
To be attached to the response slip above.
____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________

Thank you for your valid and valuable contribution! iii