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 Dear LUPUS EUROPE Friends,
Among highlights of the 3 months that have lapsed since our last newsflash, so many great events: the European Lupus Meeting, where Lupus Europe actively participated in 10 different fishbowl sessions, raising the voice of people living with lupus on a variety of subjects; several workshops on Clinical Research and clinical trials; the organisation of World Lupus day events; and a very successful Lupus Europe Youth panel. Our call for volunteers was very well received, as we had no less than 53 applications to join our Work groups. The teams focusing on Communication, on Message Tracks, and on Kick lupus are all active through regular video conferences, and the Patient Advisory Network will meet Face to face in Leuven at the end of June.
The coming months will not just be vacation… In June, we will be present at EULAR (visit us at stand V26), but also organising training for New Patient Advisory Network members, a meeting of the full PAN group and, early July, a day of exchange with industry partners. We also have a face to face Board meeting scheduled to finalise convention preparation, the publication of the Youth panel report, and active work on various projects including IMI2 submission, INTEGRATE, and ERN Work Papers input…
You also can actively show your support in June, as we are organising a Kick lupus Word Cloud contest. See more below in this newsflash, build and send your Word Cloud on “Kick lupus”, and maybe you will win one of the prizes (like being invited to the convention to present your wordcloud)
LUPUS EUROPE is active, and if this newsflash comes a few days later than expected, it is just a reflection of how busy we have been …and how GDPR has not helped us much this quarter!
Good reading
Alain
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Youth panel
On the 18th to 20th of May, 10 young people with lupus from all across Europe met to discuss what it is like to be living with lupus when you are young. With participants from Great Britain, The Netherlands, Spain, Italy, France, Belgium, Germany, Hungary and Lithuania we got a geographically widespread picture of the challenges young lupus patients in Europe live with. We covered areas such as: challenges when living with lupus; social life; adherence to treatment; clinical trials; “coming out”; my message to family and friends; and the future of a potential Lupus Europe Youth Group.
(see continued article at the end of this Newsflash)
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CONVENTION 2018
Save the date! Lupus Europe’s 2018 convention will take place in Leuven (near Brussels), Belgium, from Friday November 23 at 18:00 till Monday November 26 at 14:00. Some of our Workgroups or Patient Advisory Network members will be meeting prior to the convention and we will also offer additional workshops on November 22 PM.
This year, we will need TWO NEW TRUSTEES, to help us drive further LUPUS EUROPE towards its strategic plan objectives. Being a Lupus Europe Trustee is a great experience, and truly offers you many opportunities to impact the future of people with lupus. Whether by actively engaging in conferences, making presentations, meeting stakeholders, or designing new plans, reaching out to new audiences, there are many ways for our trustees to engage. If you want to join the team, contact Jeanette, Katharine, or the secretariat…
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KICK LUPUS MEETS THE CLOUDS – SUMMER 2018 CONTEST
There are so many ways to Kick Lupus a little (or a lot) further away!
 The newly established “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better quality of life” – that connects very well to our next convention theme “restoring hope”.
We have decided to run a “Kick Lupus word cloud” contest. Participating is very simple: Build a word cloud(*) that expresses what “Kick Lupus” means to you, and how you can “Kick Lupus” every day… The winner of the contest will be invited to present their word cloud to the LUPUS EUROPE Convention 2018.
To get you started, here are a few examples of word clouds that the Kick Lupus Team members have built…
And for YOU, What is Kick lupus? What would you call #KickLupus? Send your cloud to kirsi@lupus-europe.org and we will find a winner!
(*) Some more details :
– A word cloud is a way to assemble key words of relevance to the topic, using different sizes and colors to draw a ttention to the respective importance of each of them. Words assembled can then form a cloud shape… or any other attractive shape. You can find (free) word-cloud apps on internet, or draw them by hand and scan them.
– Submissions will be received from today until 1st September 2018
– By sending your word cloud, you agree to its use and publication by LUPUS EUROPE without payment of copyright.
– Word clouds can be made in your local language. However, we then ask you to please provide us with a translation of the words used (which can just be a list on a separate sheet)
For more information, contact Kirsi or the secretariat
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EMA/DG Sante Workshop
On May 29-30, The European Medicine Agency and EU DG Sante organised a workshop on how European Reference Network (ERN) can help get better Clinical Research. Thanks to a bursary, Alain Cornet, Lupus delegate in ERN ReCONNET, joined the event. He also had the opportunity to make a presentation summarising the ERN patients’ input on the topic. This intervention was webcasted and is available for replay here . Here are some of his key take-aways:
– First, the two key points we wanted to raise, i.e. the need for more training (for patients and for HCP in how to best incorporate patients in research), and the need to bring clinical trials to Patients rather than patients to clinical trials were both very well received. While there is a little skepticism regarding what is achievable on the 2 nd item, ERNs are the best route to achieve this objective and change the current excessively bureaucratic rules. It is the essence of the ERN to break borders, and they can truly help get more, better and simpler cross border trials.
– Second, registries are “the” hot topic. 5 ERNs are currently managing registries, and all struggle with the effort to populate and maintain, as the cost of those additional tasks is high and unfunded. Registries have a huge value when they are in place but getting there is a substantial task. Data harmonisation should first be reached, and a Cross-ERN task force will work on that.
– Third key learning is that new Clinical Trials Regulations are soon coming in to force. While they will merely be an administrative simplification, they will provide the opportunity for central filing for cross-country clinical trials. Patients might have a role to play in bringing the best out of this change and ensuring that national approvals, which will still be required, are substantially eased for small-scale local legs of clinical trials handled within an ERN. The EU is also progressing on its new Clinical Trials Database, which should replace EUDRACT towards the end of 2019. Thanks to its additional fields, showing the location of each trial, this new Database will allow better searches for clinical trials “near your home”. A much needed development!
Coming out of that meeting, it is clear that there will be plenty of opportunities for our new Patient Advisory Network members to take an active role and make a lasting impact on Lupus Clinical Research.
If you want to hear more about this meeting, and its many other learning, contact alain@lupus-europe.org
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ELM – Open Space discussion
On the day before Dusseldorf’s European Lupus Meeting, 2 Lupus Europe delegates had the great privilege to join 25 lupus experts in a special workshop on “the perfect lupus clinical trial”. The meeting was organised under the “Open Space format”: We started with an agenda that was only showing a matrix of time slots and locations, with the topics left in blank. The participants themselves then proposed the topics they would like to talk at what time! The 15 “slots” available (3 time slots X 5 meeting rooms) quickly filled up. Everyone could then select which topic he wanted to work on in each of the time slots, and even change his/her mind at any point in time. In each room, a discussion guide helped get the best of the topic’s relevant points.
After 3 rotations of 1hour, we regrouped to share our conclusions and everyone could vote for which themes should be worked further. Interestingly, the topic we proposed (on patient recruiting for Clinical trials) was one of the selected themes. We then regrouped (again everyone free to go where (s)he wanted) to work on how the ideas could be further progressed.
This was a fascinating experience : The freedom and collaborative nature created enthusiasm. At the start of the day, you have no clue what will come out, but in the end, many valuable conclusions were reached. If you want to know more about openspace, check here
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Your data – GDPR
You can’t have missed the many news and emails on Data protection over the past month. On May 25, new legislation was implemented in Europe to ensure a higher level of transparency on Data privacy.
The level of data we keep at LUPUS EUROPE is very limited and we are committed to full transparency.
If you received this Newsflash, it means that your email address is in our database, where we keep the information that you gave us, limited to name and address, email, phone number, organisation and role,…
We do NOT keep information such as age, gender, whether you are a lupus patient or a family/friend, or any other sensitive info which goes beyond our mailing/contact data needs . We do not give, transmit or sell any of our data to anyone, and do our best to keep your data confidential.
Over the past weeks, we have sought your explicit agreement to send you various types of communication. Many of you have already verified and updated your preferences in our system.
If you have not yet done so, please let us know your preferences with this mail. . You can unsubscribe at anytime using the link that is in the footer of this email. If you have any question, don’t hesitate, contact us .
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World Lupus day in Europe
As you all know, May 10 th was World Lupus Day! It is celebrat  ed by lupus groups all around the world and here is how some of our groups have chosen to celebrate the occasion this year:
Greece organised a stand with free sunscreen, Petunias and balloons to spread awareness of the disease. It looks great! 
The Netherlands made a real party of it 😉 You can see more on the NVLE Facebook page.
Lupus LT, the Lithuanian Support Club, organised its annual Conference in Vilnius, honored by the presence of. R. Šalaševičiūtė (Member of the Seimas, Chairwoman of the Social Affairs and Labour Committee) who introduced the legal aspects of  disability. Dr Sabaliauskienė, rheumatologist at Kaunas University Clinics, presented antiphospholipid syndrome. Dr Dadonienė, the Club’s tutor, summarised the issues faced by people with lupus. The Conference ended with interesting discussions between participants and tasty snacks.
Denmark organised a meeting, where a lupologist gave a general introduction on lupus. She then presented a scientific study on SLE and the heart and concluded (along with a student) by addressing pregnancy and SLE. A resident doctor then explained how lupus affects the skin, why, and what precautions to take. All 70 participants then had an intermezzo, where Jeanette invited them to exercise using her new programme for lupus patients. As the final  speaker, the president of the Danish Arthritis Association spoke about their projects and how lupus fits, and talked about a new Danish trial with medical marijuana as a pain treatment. All participants went home with a free sunscreen sample and a parasol with UV-protection.
The French Speaking Belgian Group made a stunning campaign on Facebook with a new video every day giving positive encouragement and concrete tips on how to live with lupus. The campaign has been an incredible success with more than 30,000 views. You can still find it here. They also held a conference  morning discussing “new treatments on the horizon” and “lupus and food”. The conference obviously had to finish with a buffet lunch for the 100 plus attendees, giving everyone opportunities to share news, and meet the Professors and guests informally.
Many more of our members have held great events to raise lupus awareness on the occasion of World Lupus Day. Congratulations to all, and many thanks for your on going energy! |
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Youth panel
On the 18th to 20th of May, 10 young people with lupus from all across Europe met to discuss what it is like to be living with lupus when you are young. With participants from Great Britain, The Netherlands, Spain, Italy, France, Belgium, Germany, Hungary and Lithuania we got a geographically widespread picture of the challenges young lupus patients in Europe live with. We covered  areas such as: challenges when living with lupus; social life; adherence to treatment; clinical trials; “coming out”; my message to family and friends; and the future of a potential Lupus Europe Youth Group.
We asked the participants to come up with their 3 biggest challenges when it comes to living with lupus and wrote them on a flipchart. After discussing each item, we asked them to come up with some positive things about living with lupus, writing them on butterfly-shaped post its and fixing them to the same flipchart. A view of the colourful butterflies spread out between all the challenges illustrates perfectly how having lupus doesn´t always have to be a negative thing. There is hope and positive things even in the darkest hour.
 The most common challenge for our panellists was connected to their social life and we decided to focus more on this area. Firstly, identifying what a social life entails, we then tried to find the areas which are impacted by having lupus, both in a negative and a positive way. The panellists found out that most of their identified social life challenges were a youth specific issue and would not have existed or would have been very differ ent, if they had been 20 years older for example.
Connected to this topic is the consideration of when, how and whether to be open about having lupus, in other words, “coming out” in different situations. Do you tell your employer or work colleagues? How about distant friends? Close friends? Distant family? Close family? Partner? Do you reveal it on a first date? Or at a job interview? The discussions were enthusiastic and diverse.
 On Saturday evening the group walked into town for dinner, which turned out to be quite the experience, since there was a Gay Pride Parade taking place and the entire City Centre was one big party and all the beautiful old buildings were lit up in rainbow colours.
Sunday morning, we asked the panellists who they would like to send a message to and what that message would be? After discussing different messages and recipients, the group identified two primary groups: non-lupus doctors; and those closest to us (partner, close family and friends). The objective was now, to write a letter to each of those groups with the message that we want to convey. After this, we discussed the future of Lupus Europe Youth. The panellists agreed, that it should not end with this panel, but a real “Youth Group” should be formed. Understanding that the means of Lupus Europe are limited, the group suggested using social media and other online services as the primary tool for future work. It was a big wish to have a large Youth Meeting for young lupus patients from all over Europe. Some of the participants took it upon themselves to carry this work forward and “create” the Lupus  Europe Youth Group! There was also time to ask Professor Frederic Houssiau questions about all aspects of the disease, which these young people took full advantage of.
All in all, the Lupus Europe Youth Panel 2018 was a great success for both organisers and participants and we now have a lot of work ahead of us, trying to gather all the information into future projects. Thank you to all participants for a great weekend with a very positive atmosphere, a lot of creativity and good work!
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