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LUPUS EUROPE launches new 5 years strategic plan, appoints Jeanette Andersen as Chair and creates a General Secretary position

The LUPUS EUROPE convention which took place in Milan from 15th-19th November opens a new era for the organisation in more than one respect: A new strategic plan that will guide LUPUS EUROPE for the next 5 years was presented and endorsed. The constitution was amended to better reflect the collaborative and inclusive structure of LUPUS EUROPE, and a new board was appointed. Last but not least, the participants enthusiastically approved a new LUPUS EUROPE logo that will better convey the empowerment and hope that are at the core of our efforts.

Over the past year, starting with the 2016 Wurzburg convention, LUPUS EUROPE’s board of trustees has worked on the definition of strategic goals to drive our priorities over the next 5 years. In a dialogue with Academics, researchers, other patient organisations, Industry and our members, we have identified how we could build further on the 2013-2017 Strategic plan to take our results to the next level. Our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus” remains unchanged, and the pillars of our action, Research that benefits people living with lupus, Empowering members, and Being heard and acting also remain, but our past successes will now allow us to reach further in each of these areas.
Few examples:
In the area of research, we will create a Patient Expert Group, 7 to 10 trained and energised Expert Patients, appointed to act as a liaison and resource to scientific projects and Clinical Trials related to lupus. This group will operate as a network, connected to the broader community of patients interested in Research and to our members. We will also intensify our own research with annual rather than bi-annual patient panels – the next one being on youth.
To empower our members, we will create new, web-based collaboration structures, as well as working groups that will focus on specific topics throughout the year.
In terms of increasing our external impact, we will define and deploy priority message tracks and toolkits to ensure these are effectively relayed, and amplify our presence at key events where we can make a difference, as well as taking an active role in the European Reference Networks where we have recently been appointed as the voice of Lupus patients.
Our Strategic plan also includes a significant focus on ensuring sustainability. The constitution change to create a general secretary position to support the board is a first step in that direction.

The LUPUS EUROPE Council voted significant amendments to constitution, with a new section dedicated to the various bodies that support the action of the board: Co-opt advisors, Medical Advisory Board, and the General Secretary. By recognising the critical roles and mandates of these three important groups, we empower them to act and bring value to LUPUS EUROPE, helping us to steer all resources and enthusiasm available to achieve our goals. 
The convention participants further decided to create working groups that will be active on the subject of member collaboration and designing effective message tracks for the use of all members.

As we worked through our strategic plan, the need to better express the evolution of LUPUS EUROPE’s personality emerged. Our logo, the butterfly ‘surrounded’ by 2 hands expressed the care we have for all people with lupus very well, but felt overly protective; possibly constraining and limiting. A fulfilling life means empowering patients, helping them to become actors and leaders of their lives, standing up and stretching their wings.


After 6 years as Chair of LUPUS EUROPE, Kirsten Lerstrøm took the decision to step down at this convention. Her energy, relentless effort and accumulated knowledge cannot be recognised enough, and we are extremely thankful for her continued contribution and support. The council saw the re-election of Katharine Wheeler, and the election of Annemarie Sluijmers as trustees.

The post council Board meeting then elected Jeanette Andersen as new Chair. Jeanette, from Denmark, holds a master’s degree in German and Philosophy. After working several years as a high school and university teacher, she was diagnosed with SLE, APS and Sjögren in 2011, forcing her to stop her professional activity. Jeanette is a co-founder of the EULAR Young PARE Working Group and has taken special interest for the problems that young people with lupus encounter in the area of education, work or starting a family. She joined LUPUS EUROPE’s board in 2015. This year, Jeanette has been accepted into the EUPATI patient expert research partner programme, which focuses on patients’ involvement in research.
The board further resolved to appoint Alain Cornet as General Secretary. Here is the new board:

Left to Right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Sara Badreh (Research & Youth), Alain Cornet (General Secretary), Anne Charlet (Vice-Chair), Annemarie Sluijmers (Skin) and Jeanette Andersen (Chair)

The convention was a rich moment for our community and the above is only a glimpse of the subjects discussed. You will soon discover the full report and the presentation slides on our new website which will be online during the month of December. Please stay tuned and don’t hesitate to reach out to us for any questions you could have. We look forward to another great year to progress towards our vision… with your help!

Jeanette Andersen,


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