The Newsletter of LUPUS EUROPE March 2013

Dear Friends, With this photo from the LUPUS EUROPE Convention 2012 in Cyprus we invite you all to enjoy this edition of NewsFlash: the first one published by the new team. We will build on the good work done over the past four years and hopefully bring about even more advancements during our time. Since our Seasons’ Greetings in December, the newly elected Board of Trustees has been busy with small and big issues like changing contacts and addresses (not a small task ;-P), getting introduced, jumping into the daily matters and getting very involved in making the planned activities and projects possible. The message from the Convention, “LUPUS EUROPE Tomorrow” Dialoogle session was extremely valuable for the new board and served as input to the strategic planning workshop earlier this month. In April the International Congress on SLE takes place in Argentina, in May we celebrate World Lupus Day and EULAR Congress is in June. Busy, busy days coming up! But despite flu, flares and ski-injuries, we will get there. Two exciting projects will be launched very soon: the Unmasking Lupus art competition and the new MyLupus tool for personal use online, as a smartphone app or on paper. Member groups received the report from Convention together with a note on sessions not included from the Saturday Programme. Members will also receive minutes and notes of meetings and conference calls taking place since Convention, to be mailed shortly. On behalf of the new LUPUS EUROPE Board of Trustees Kirsten Lerstrøm, Chair

*** LUPUS EUROPE Convention 2012, 14-18 November, Cyprus ** Lucy – LUpus in CYprus, is the lupus network within CYPLAR, The Cyprus League Against Rheumatism and the host of a most loving, warm, inspiring and motivating convention! Everything was perfect, from the high quality official opening address to the inspiring and relevant presentations on the special Cypriot angle with personal involvement like Yoga, Thai Chi, Footcare and Nutrition. Greek song and dance was also an important input to the agenda. And so well placed! The love and positive energy came from the music and dance – in the programme and the amazing Taverna evening on the final night on Saturday. Thank you, LUCY and CYPLAR for making this event so very special. A report was made by Convention Secretary Marika Chrystifiori, CYPLAR and edited by Yvonne Norton. This was sent to member groups.

*** LUPUS EUROPE Convention 2013, 27 November – 1 December, Paris *** Dates for convention this year are now fixed and the venue will be in Paris at the premises of EURORDIS (European Rare Diseases Platform) with nearby accommodation. More information, invitation and programme soon to be distributed. *** New board of Trustees *** The new board was elected at the Cyprus Convention. With warm thanks to the outgoing board – we’ll try our best to fill your shoes…! Elected:

Chair: Kirsten Lerstrøm (outgoing Vice-chair, member Lupus DK) Vice-Chair: Augusta Canzona (member Lupus Italy) Secretary: Anne Charlet (member Lupus France) Treasurer: Alain Cornet (member Lupus Belgium) Membership Manager: Blanca Rubio (member Lupus Spain)

Vacant:

Convention Manager

Co-opted:

Liaison Belgium: (upcoming secretariat) Bernadette van Leeuw (President Lupus Belgique) Webmasters: Simone Mueller-Pretis (Lupus Germany) and Gabor Varga (Lupus Hungary) Medical Advisor Matthias Schneider, Heinrich-Heine University Hospital, Düsseldorf

Medical Advisory Panel: Head Matthias Schneider, Heinrich-Heine University Hospital, Düsseldorf Professor David Isenberg, University College Hospital, London Professor Caroline Gordon, Professor Ricard Cervera, Department of Medicine, Universitat de Barcelona Professor Dimitrios Boumpas, Biomedical Research Foundation , Academy of Athens Professor Marta Mosca, Università Degi Studi di Pisa

A detailed presentation of all newly elected Trustees is available on the web. *** Lupus Europe Trustee meeting, January 2013 ***

Lupus Europe’s first real Trustee Meeting with the new board was held in the middle of a snow storm outside of Brussels, January 18th – 20th It was a full 48 hours of work, with one quick trip Friday Evening into Brussels for excellent mussels!

(Alain Cornet, Blanca Rubio, Augusta Canzona, Kirsten Lerstrøm, Bernadette van Leeuw, Anne Charlet)

*** Strategic Workshop (“What do you expect from LUPUS EUROPE Tomorrow”) ***

March 1-3rd the Board of Trustees held the Strategic Workshop, just outside of Brussels. The goal was to establish the strategic guidelines for 2013 through 2017. Thinkcs.org, the same organisation that ran the last strategic meeting in 2009, facilitated the meeting. We left the meeting with a draft defining the Strategic Plan for LUPUS EUROPE for the coming years. This draft will be adjusted and fine-tuned after meetings with key stakeholders during the events in the coming months and presented to the council at the 2013 Convention for approval.

*** LUPUS Research Institute Innovator Award ***

Grant Application Deadline: May 16, 2013 The Lupus Research Institute (LRI) invites applications for its Distinguished Innovator Awards, a global program that will provide outstanding scientists with substantial support for up to four years to conduct novel research into the fundamental causes of lupus and so provide new directions towards a cure or prevention.

Upcoming Events

*** International Congress on SLE, April 18-21, Buenos Aires *** LUPUS EUROPE will attend with Blanca Rubio, Kirsten Lerstrøm and Alain Cornet in the weekend. We look forward to connect and reconnect with contacts from sister organisations and others in the community to get inspired and learn from experience from all over the world. *** EULAR Congress 2012, June 12-15, Madrid *** LUPUS EUROPE will be present at the EULAR Congress, with a stand in EULAR Village and attend the various sessions of relevance to SLE; PARE and EULAR Task Force on SLE. The Board will also convene for a Trustees Meeting over the weekend upon the closing of congress

*** World Lupus Day 2013, May 10, Global ***

– check the www.worldlupusday.org for events all over and in Europe.

Ongoing initiatives are • Send a text message to ten people telling them about lupus and asking them to

forward to another ten who are not aware of how it is to live with lupus – then another….

• LupusCrossing - send butterflies around the world to create lupus awareness

*** Other main events of lupus interest ***

• DIA European Meeting, March 4-6, Amsterdam. Joep Willing, NVLE, and Tove Cassøe, Lupus DK attended

• EUPATI Workshop, April 19, Roma, with Francesca Marchiori, Lupus Italy

• EPF Seminar and AGM, April 22-23, Dublin – missing a candidate to attend!

• World Autoimmune Arthritis Day, May 28 – LUPUS EUROPE will have a virtual stand Ongoing Projects

*** Treat to Target – T2T in SLE *** In January was the third meeting held to define treatment goals for lupus. The original group of about 20 European rheumatologists and immunologists, a dermatologist and LUPUS EUROPE were now joined by more international specialists from rheumatology, nephrology and immunology, The group worked on four overarching principles and 11 specific recommendations. The result will be published for EULAR 2013 in Madrid.

*** Living with Lupus *** Career, Fatigue and Quality of Life are three important issues to deal with when living with lupus. These are also some of the main findings of the survey “Living with Lupus, Work Situation and Career” (Lupus European Online – LEO – survey 2010), conducted in partnership with representatives from the LUPUS EUROPE Medical Advisory Board and UCB Pharma SA, Belgium. In 2012 the common theme for World Lupus Day was Make LUPUS Work, where this story of the considerable burden of disease was explained and supported by the delegates to the LUPUS EUROPE Convention: The impact on the daily living with lupus has considerable consequences. Especially as the average age when diagnosed is 37 years old. For those who reported a career change, it generally happened within 1 year of diagnosis. 52% reported being in paid employment, but could also report considerable impact on work relations – reduced hours, productivity, and overall work impairment.

The campaign addressed the issues of Career, Fatigue and Quality of Life and in some member countries this new knowledge was used in the operations of the national group. Cases from Holland, Italy and Denmark were presented at Convention 2012 and the information from here will be made available for all member groups as inspiration for own initiatives. *** Lupus as I see it – a photo competition by Lupus Hungary *** In 2012, the Hungarian Gabriella Schopper Lupus Group launched a photo competition called, “Lupus as I see it”. The competition received a good response with some really fine entries illustrating different approaches to lupus as seen by not only those diagnosed, but also family, friends and colleagues. The awarding ceremony took place in November 2012 in Budapest with the Minister of Health Csilla Pártos seen here together with Chair Zoltán Purgel awarding the winning entry of the competition. Please see the entries on the FB of the Gabriella Schopper Hungrian Lupus Group

*** Unmasking Lupus – an European art competition ***

“Unmasking Lupus” is a campaign whose aim is to help raise awareness of lupus and its impact on people living with the disease, as well as help de-stigmatise lupus and enhance empathy for those living with it. At the heart of the campaign will be an art competition, with creative submissions (drawings, paintings, poems or photos) invited from the lupus community (patients, care-givers, families and friends) to illustrate their experiences of lupus and what it means to them. A full communications campaign will support all major milestones of the project

with the selected winner’s illustration forming the visual representation of the resulting campaign’s educational materials. The campaign is led by LUPUS EUROPE with the support of GlaxoSmithKline and Human Genome Sciences.

For further information please contact project manager Yvonne Norton, yvonne.wmlg@sky.com *** MyLupus app *** At the convention in Cyprus, we discussed the prospect of the new smartphone app (or web or in print) called MyLupus. MyLupus is a tool to help a person with lupus achieve a greater degree of clarity regarding the most pressing issues and also to help them establish their own priorities and to facilitate the dialogue with the healthcare providers. The use of the application, the information provided and the recorded data should improve the understanding of the disease and help the person with lupus communicate what is living with lupus is like to the physician. This app/programme came about from an idea mentioned during an informal meeting of representatives of some national lupus groups in Europe, a specialized health psychologist from a Lupus Clinic in UK, a medical communications agency and GSK. A group of beta testers has been appointed and the steering committee to oversee the launch and follow-up on the project is being established, so that the application can be launched during the spring. Best regards Anne Charlet Secretary, LUPUS EUROPE