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WORKING TOGETHER ON A REFRESHED STRATEGIC PLAN

The 24th LUPUS EUROPE Annual Convention was held in Paris, France, 27 November-1 December, 2013. The meeting took place in the premises of the European Organization for Rare Diseases (EURORDIS).
“Is lupus rare?” was the theme of the event. A complete programme of the convention can be viewed here.

Main sponsors of the 24th Annual Convention was GSK, Lilly, UCB and Foundation Maladies Rares (the French Foundation for Rare Disease). The meeting was successfully organized in cooperation with Lupus France.

LUPUS EUROPE board of Trustees held a Pre-Convention Trustee Meeting on Wednesday 27 November as well as a Post-Convention Trustee Meeting on Saturday 29 November. Various items related to the convention were discusses and a number of board issues were resolved.
All country delegates who arrived on Wednesday took part in the welcome reception and official opening dinner organized by Lupus France.

We were delighted to welcome a number of Prominent Speakers who made a significant contribution to the final convention program. We would like to thank all of them for being able to take part in the convention. The Speakers of the 24TH LUPUS EUROPE ANNUAL CONVENTION were:

• Thomas Heuyer - Executive Officer of Platform for Rare Diseases, “Plateforme Maladies Rares”
• Vololona Rabeharisoa - Centre de sociologie de l’innovation, MINES ParisTech & EPOKS Partners
• Dr Baptiste Hervier - French Lupus National Reference Center, Pitié-Salpêtrière Hospital, APHP, Paris, France
• Prof Zahir Amoura - French Lupus National Reference Center, Pitié-Salpêtrière Hospital, APHP, Paris, France
• Prof Odile Kremp, MD, PhD - Director of Orphanet
• Prof Loic Guillevin - Hospital Cochin, Centre de Reference des Maladies Autoimmunes Systemiques Rares, Hospital Cochin, Paris
• Prof Nathalie Costedoat-Chalumeau - Hospital Cochin, Centre de Reference des Maladies Autoimmunes Systemiques Rares, Hospital Cochin, Paris
• Audrey Tranchand - Paris representative for the French Foundation of Rare diseases
• Anja Helm - Senior manager of relations with Patient organizations, EURORDIS

The Official opening of the meeting was presented by Ginette Volf (Chair of Lupus France) and Kirsten Lerstrøm (Chair of LUPUS EUROPE) who welcomed all the delegates and greeted everyone for being able to take part in 24th LUPUS EUROPE Annual Convention.

During the sessions marked in the program as Council Sessions the board reported on the major achievement of LUPUS EUROPE over the past year namely teambuilding, strategic plan, key events and projects, and what the organization is looking to accomplish in 2014.
The chair of LUPUS EUROPE, Kirsten Lerstrøm presented the Strategic Plan 2013-2017, its vision, mission and three strategic drivers and also the initiatives to which w the organization will reach its goals. Further during the meeting Bernadette Van Leeuw, Blanca Rubio and Anne Charlet (LUPUS EUROPE Trustees) introduced to the attendees the specifics of the plan and the concrete activities in order to achieve meaningful results. The three Strategic Objectives that organization introduced were: PEOPLE WITH LUPUS in Europe participate in, and benefit from, lupus research; MEMBER ORGANIZATIONS are enthusiastic and empowered; LUPUS EUROPE is heard and acting.

Further during the program of the event Alain Cornet (Treasurer LUPUS EUROPE) reported on the organization’s Budget and Funding Strategy. He introduced a new fund-raising opportunity for LUPUS EUROPE, namely Grandeco, a producer of decorative wallpapers and added that this is the first charitable gift agreement with a non-pharmaceutical partner that LUPUS EUROPE has signed.

A number of international member organizations were given the opportunity to present their National Reports where at the same time present One Idea for discussion with the rest of the LUPUS EUROPE members. Delegates from the following countries such as Belgium, France, Italy, Greece, Finland, Estonia, Germany, Hungary, Denmark, and Cyprus had the opportunity to share their current project and the situation of their organizations.

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Stefania Viscillo - Winner of the “Unmasking Lupus” contest with “A Second Chance”

Major projects that have been carried out during the 2013 year were presented to the members. Blanca Rubio (Membership LUPUS EUROPE) introducesed the results of the “LUPUS EUROPE Member’s survey” that has been distributed over the last few month before the Convention 2013. A final report of the LUPUS EUROPE Membership survey will be distributed to all member organizations when finalized.
The award ceremony of the Unmasking Lupus campaign took place on Thursday evening, where the winner of the competition was announced and officially awarded by the trustees of LUPUS EUROPE.

The treasurer Alain Cornet introduced to the participants the last stage of the Unmasking lupus project. He defined the so called “Lupus Planet” to be a multimedia project telling the Lupus story of the Unmasking Lupus contest winners and allow for new stories to be told. The project will give the opportunity to LUPUS EUROPE to become more visible, including giving international visibility of national members, it will be a concrete deliverable that we can leverage with sponsors to get funding. The overall feedback on the concept was positive and further discussion will take place soon.

The program of the convention had included a social programme that was extremely well planned and enjoyed a number of positive feedback. Sightseeing to the Palace of Versailles and ride through the most famous Parisian Quartiers took place on Friday evening. The group had the chance to experience unforgettable guided tour of the royal château in Versailles and the chance to see the palace as French kings once did.


Tour at the Palace of Versailles

With one candidate for each position to be filled, the election procedure was soon accomplished and the new Board of Trustees formed. Augusta Canzona and Blanca Rubio terminated their term of office as of November 30, 2013. Where Blanca was re-elected to serve as Vice Chair of LUPUS EUROPE for the term as of November 30, Bernadette van Leeuw co-opted Trustee was confirmed as in charge of Research matters and Foula Markidou was elected new member of the Trustees.

The newly elected board of trustees are as follows:

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The newly elected Board of Trustees (left to right: Blanca Rubio, Anne Charlet, and Foula Markidou, Kirsten Lerstrøm, Bernadette van Leeuw & Alain Cornet)

A full evaluation process was in place with detailed response on the general and individual sessions. The overall experience of the convention was awarded with high results and all the delegates who took part had shared a positive feedback on all the activities during the event. A concise evaluation process was organized during and after each meeting day where the participants had the chance to share their personal opinion and possible suggestions about the content of the convention. LUPUS EUROPE wants to create an event that is memorable while at the same time had a value to its member organizations.


“Unmasking Lupus” Contest Ceremony