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Dear Lupus Europe Friends and Members,
We would like to take the opportunity of this January Newsflash to wish all of you a happy and healthy new year and thank you for your collaboration throughout the past year. 2018 has been a very busy year for Lupus Europe with a lot of Conferences and meetings, an exciting panel on Youth, a wonderful convention and plenty of interesting new connections. It has also not been an easy year, as we have received several disappointing news reports about (drug) research, but we also know that other promising new initiatives are in the pipeline, so the hope is there, and we will actively engage with all parties to make progress happen. We have many projects in our pipeline… read more below in this newsflash, and you will realise that, all in all, we are looking forward to what looks like an exciting year 2019.
Jeanette Andersen,
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LUPUS EUROPE Council renews Board of Trustees
New trustee elections s aw the renewal of Anne Charlet and Jeanette Andersen mandates, and the addition of Laura Sinnett and Helga Ovens as new trustees, in replacement of Katharine Wheeler and Sara Badreh.
Speaking about her appointment, Helga said : “I’m so pleased to be elected as Trustee on behalf of Lupus Europe members. Being new to the organisation and recently meeting country delegates, absolutely blown away by the commitment, dedication and combined efforts in the aim to strive for a world without Lupus. I urge everyone to attend the yearly conference (you won’t be disappointed!) and look forward to working together on our organisational priorities’.”
We are all very pleased to count Helga and Laura on our board, and to see that LUPUS EUROPE’s board succession unfolds in a very smooth way. Many thanks to the candidates volunteering to take board positions, in LUPUS EUROPE or their national groups. It is thanks to you that the family of people living with lupus in Europe stays dynamic and engaged.
In its first Post-convention meeting, the board confirmed Jeanette Andersen’s re-appointment as Chair, Anne Charlet as Vice-Chair, Kirsi Myllys as Treasurer and appointed Annemarie Sluijmers as Secretary. Congratulations to all !
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PARTICIPATE TO INTEGRATE PROJECT, PISA March 2019
On March 2-3, Lupus Europe, University of Dusseldorf and Scuola Superiore Sant’Anna (Pisa) will organise a focus group for the INTEGRATE project. This EU funded project, led by Prof. Marta Mosca, Giuseppe Turchetti and Matthias Schneider seeks to better INTEGRATE the patient and Doctors point of views in a holistic approach to systemic lupus. We do know that this is a repeat request from patients. We still have a few slots to participate in this meeting. The condition to participate is to have a clearly diagnosed Systemic Lupus (SLE, not skin lupus) yourself, and have at least a basic command of English to interact with other participants and read English language documents. The meeting will be held in Pisa, Italy, and costs will be reimbursed. If you are interested, please quickly complete the form on http://eepurl.com/gbVrYz AND send an email to secretariat@lupus-europe.org. The final selection of participants to ensure diversity of origins and backgrounds is imminent, so please let us know promptly if you are interested.
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Our new web is on!
After a full year of thinking, design and implementation, our new web is on. Just click on www.lupus-europe.org and see how we now look.
Its modernised appearance reflects the strong, dynamic and positive approach we want to have in support of a fulfilling life for all people living with lupus in Europe. The design is inspired from the logo that was selected a year ago by the council participants. The website provides a direct access to all national websites or Facebook pages and to key places where quality lupus information is maintained. It also features a Members-only area where delegates and work group members can collaborate through a specifically designed platform that helps exchange information or files, work together on projects, or bring new ideas and suggestions.
Our BLOG is also integrated in the new website, and you should soon benefit from an RSS feed to receive the BLOG news directly in your mailbox.
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LUPUS EUROPE’s 2018 Leuven Convention, another Big success 😊
From November 23 to 26, 37 member delegates and 11 guests met during Lupus Europe’s 2018 Convention, this year in Leuven. This has been a great event, w  ith a tremendous level of collaboration in no less than 15 workshops, the election of 2 new trustees, the launch of our new website and its members collaboration section, and so many other things….
The 2018 convention theme was “Restoring Hope”. Lupus is not always easy to deal with and we can often feel down: when a flare is painfully reminding us of the disease; when one more clinical trial fails; when we feel tired and misunderstood… As leaders in patient groups, we also regularly receive calls for help from people who are so scared after just being diagnosed, or who face depression. It is so easy to lose hope when you have lupus…. Yet there are reasons to keep hope: the search for new medication is more active than ever; patients are becoming more involved handling their own disease; lupus awareness is growing; legislation in support of people with disabilities (visible or not) is progressing; and patient support groups are bringing hope to their members in many different ways.
 Our program gave a very large place to interactions between participants, with 15 different workshops on various topics centered on the “restoring hope” theme. Participants defined and selected themselves the themes that they had most interest for, including how patients can better participate to research, making the web more positive, giving inspiring life stories, or enjoying the small things in life.
We obviously reviewed the activities of Lupus Europe in 2018, and in our council session, renewed the board and set the direction for 2019.
Several external speakers gave us additional insights on the theme of “restoring hope” : Professor Houssiau, chair of the European Lupus Society addressed the recent medical developments, and the reasons to hope they provide; Bernadette Van Leeuw, Chair of Lupus Belgium (French speaking group) highlighted the importance of action to make better things indeed happen as a key component of hope; Torben Wiese, inspirational speaker, invited us to all become change agents; and Nele Cayers (Chair of PARE) explained how we can achieve better results by leveraging the broader EULAR community. She encouraged us to submit more abstracts for EULAR PARE (the deadline is Jan 31, it’s not too late and we can help if needed).
The convention closed with an excellent seminar from Sylvia Gauman (Swiss delegate) on improving our communication with Journalists…
A detailed convention report can be downloaded here: (https://www.lupus-europe.org/wp-content/uploads/2018/12/CONVENTION-REPORT-final-Version.pdf)
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KICK LUPUS Contest Winner
 In Milan, we agreed that we should make Kick Lupus a recurring theme for the next few years, seeking ways to inspire people living with lupus to kick their lupus a little further away every day, by focusing on what they can do to achieve this. A team of seven was assembled and designed the 2018 Kick Lupus contest. They asked people with lupus to submit a word cloud showing how they kick lupus every day. The group received 35 great submissions, combining many artistic skills and insightful word selections. The winner of the contest was invited to the Convention. Kirsi presented a short PowerPoint animated clip with selected entries and then announced the winner, Sarah Woods, inviting her to present her word cloud.
Sarah’s intervention was a very intense moment as she showed all the depth of her beautiful artistic work, a tree going from the roots of her disease to her most aspirational aspects. She told us of her late grandfather, diagnosed with lupus in the 70’s and who passed away only a few years later at age 53, due to complications associated with lupus. Sarah’s symptoms emerged in her late teenage years, but despite her frequent mentions of lupus as a possible cause for her many symptoms, she was only diagnosed earlier this year, resulting in her receiving proper treatment. She now feels so much better and can manage her full time NHS Mental Health Nurse job, whilst also being able to cope with caring for her three children. She feels critical that to truly ‘Kick Lupus’, timely diagnosis needs to be addressed.
Participating to the word cloud contest also became part of Sarah’s own healing process. She chose the visual of a tree, with strong roots providing stability, and with its associated notions of growth, life and renewal. Her tree is heart shaped, and its elements are interconnected so that it can thrive even if one of them would fail. She coloured the head of the tree person in a blue, as a reflection of her mood, and protected her from the sun with the leaves. She carefully placed the words in the tree associating their meaning to their place in the tree. Finally, she read a poem that she wrote (see annex 3) about how she felt in the prolonged period of getting diagnosed and taken proper care of.
A very emotional moment that ended with a standing ovation for Sarah and her beautiful work.
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PRIORITIES 2019
2018 is already behind us with many achievements that we can be proud of, and time has come to focus on 2019. Based on the convention input, theb board has aligned the key priorities for the new year. These will go in the direction of consolidating progress achieved in 2018 and moving to the next level projects from our strategic plan in each of our strategic pillars.
With regards to “People with lupus participate in, and benefit from, Lupus research”, we will beef up our Patient Advisory Network with a new wave of inductions in 2019; run a patient panel , following those on treatment, adherence, Clinical Trials and more recently Youth and prepare for a broad scale “living with lupus” survey to update the findings of the 2010 LEO survey.
With regards to “Member organisations are enthusiastic and empowered », we obviously will focus on our next convention (UK, November 2019), but also add some interim “get together”, in the form of two webinars, and continue to build cross country collaboration (with a new Kick Lupus contet), and highly motivated topic specific networks (on communication, enjoying small things, Kick lupus, and quality website certification)
With regards to “Be heard and acting”, our key project will be to shoot and distribute 5 videos promoting exercise for people living with lupus, from being stuck in your bed to aerobic-style jumping. In a more traditional way, we will develop message tracks and material to build awareness on lupus, that can be replicated and translated by members to create local press releases.
We have many additional activities on our list to support our members, participate in projects and key congresses, animate social media & web platforms, bring transparency to higher standards., including being the voice of people living with lupus in multiple audiences, such as the ERN (European reference Networks), EULAR, PARE, The task force on SLE, IAPO, … These are equally important, even if less glamourous, as it is through this on-going engagement that we can truly champion the cause of people with lupus and help kick lupus a little further away every day. If you are yourself living with lupus, join us by volunteering for some of those projects using this link http://eepurl.com/gbVrYz
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LUPUS EUROPE at
EURORDIS CEF
LUPUS EUROPE is a new member of EURORDIS, the European umbrella organisation for rare disease patient organisations. We, Anne Charlet and Kirsi Myllys, attended the EURORDIS Council of European Federations meeting in Paris on 11-12 December 2018. Participants came from all over Europe, each representing a rare disease organisation. Lupus Europe was one of the biggest organisations in this group. The meeting started with ERN & Healthcare Advisor Matt Johnson at EURORDIS (link: https://www.eurordis.org/person/matt-johnson), who gave us an update on ERNs. Matt said only about one third of the ERN members are really active. He named one of the challenges of the ERNs being keeping the networks manageable.
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According to him, there is no need to have 1,000 hospitals as members, rather to create national networks and have the networks join ERNs as an entity. Next we learned about horizon scanning for clinical trials and this will be a main task for the LUPUS EUROPE PAN (Patient Advisory Network) in 2019. It is crucial that a patient organisation detects promising products early, and offers patient engagement (PAN) in research already in the pre-clinical stage. This meeting was a great networking place, too, as all meetings are in Europe. We became connected with a Swiss patient advocate for Sjögren’s Syndrome, who is founding Sjögren Europe organization. She’s looking up at us as an organisation model.
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Volunteer to support LUPUS EUROPE
LUPUS EUROPE’ ambitious program for 2019 will only be fully delivered if more people living with lupus volunteer to help us. We need your support to increase our patient Advisory network, take part in one shot patient panels, translate documents, help us keep social media active,… You too have skills or experience that you can bring to the team. If you are ready to help us, whether on an ad hoc, per project or a more structural basis, let us know. Fill in this simple form telling us the type of things you would be interested to do or skills that you could contribute, so taht we can match you with opportunities when they arise. You will be joining a great and enthusiastic team!
THANK YOU!
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