Alain CornetThe Vienna Convention is just over two months away now. Has your organisation submitted its trustee nominations yet? If you have someone you think could be an asset, please don’t hesitate to get in touch with the LUPUS EUROPE secretariat (secretariat@lupus-europe.org) for more information on how to apply. We are also still looking for volunteers to […]
Alain CornetJune is quite a busy month for LUPUS EUROPE and its representatives. Here’s some of what’s going on. Nuria Zúñiga is representing LUPUS EUROPE at Doctors 2.0 & You from 4th-5th June in Paris. She will also be representing us at the Eyeforpharma patient summit in London from 25th-26th June and at Aware for All in London. […]
Alain CornetLupus Europe has featured in EPF’s latest newsletter, with a focus on our World Lupus Day campaign. Click here to see the article.
Alain CornetHere is our second ‘Trustee story’, this time from Katharine. When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations. I haven’t been able to work for a few years due […]
Alain CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
Alain CornetFrom the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee […]
Alain CornetWe are happy to share a video for World Lupus Day where Claudine, Jane and Jeanette speak of the importance of such an event. [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
Alain CornetWe are currently at the Eular PARE congress in Dublin and delighted to report that our World Lupus Day poster has been very well received. Here are some of the comments, among many: “Very evocative”, “A really strong message”, “It really talks to me of control, not a question of being ‘friends’ with the wolf […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetInterview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]
Urgent Reminder: The #NotJustMySkin campaign wraps up on April 19th. Join us in advocating for the prioritization of skin health by signing the open letter at http://notjustmyskin.org. Show your support & help spread the word by sharing this post. #ActNow #SkinHealthAwareness
🚨 Calling all lupologists!
✅ Kindly share our Living With Lupus survey and help us get as many responses as possible.
🇪🇺 Available in 21 languages!
https://buff.ly/3VZLsEc
✅ Just 3 more days before the 4th @SLEuroSociety Advanced #Workshop for #Lupus of Porto (19-20 April) and I'm happy to share my recap slide about antinuclear antibodies (#ANA) in #SLE 📝 We're going to discuss atypical lupus cases...so it's good to know what is typical first 👍
Part 2 of our #LupusNephritis case-based modules reviews treatment guidelines for #lupus nephritis and the prevention of chronic #kidneyDisease, with expertise from @ykoteng_LUMC and Luis Quintana: http://lupusCME.org #RheumTwitter #rheumatology #SLE #kidney #CME #autoimmune
Our Board & extended Board met last week for 2️⃣ full➕exciting days of work on the strategic plan. Lots of exciting plans in the pipeline🤩!
We also hosted an Industry Roundtable, bringing together our Industry Partners to talk about our work.
More on that 🔜 in the newsletter!
Desde Lupus España ( @Felupus ) 🙏 os pedimos 🙏 vuestra colaboración para difundir y rellenar esta encuesta para pacientes “SWISS KNIFE SURVEY” de @LupusEurope en Español 🇪🇸
Enlace https://www.surveylegend.com/s/5h8u
⏳️En 15 minutos tu voz y realidad será trasladada y ➕️ visible❗️
✍🏻Попълнете анкетата.
🔊Споделете с вашата общност.
👨🏼⚕Ако сте здравен специалист и лекувате пациенти с лупус в Европа, ще сме много благодарни, ако информирате вашите пациенти.
https://s.surveylegend.com/-NuOC4mQDrt8udTrqS85
Hello lupologists!
A SLESIS-R >6 = likelihood ratio of 5.5 to develop an infection in the next year.
SLESIS-R: an improved score for prediction of serious infection in patients with systemic lupus erythematosus based on the RELESSER prospective cohort https://lupus.bmj.com/content/11/1/e001096
Tässä Lupus Europen kysely, vastauksia toivotaan myös miehiltä. Vastausaikaa on tiistaihin 30.4. asti
s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
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Drogie Motylki, 🦋🥰
mamy do Was prośbę o wypełnienie ankiety LUPUS EUROPE.
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
Udział w tego typu ankietach ma wpływ na badania, zatwierdzenie leków, praktyki lekarskie oraz na publikacje naukowe wyników, które są cytowane w różnych artykułach w czasopismach medycznych.
Dzięki poprzedniej dużej ankiecie powstał lupus100.org
Dlatego bardzo prosimy o poświęcenie kilku minut na wypełnienie ankiety. Dzięki temu, mamy wpływ na to, co dla nas jest najważniejsze.
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
#lupuspoland #lupuseurope #ankieta #toczeń #sle
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LUPUS EUROPE is conducting a survey to gather insights into the experiences of individuals living with #lupus across Europe.
🌍 In 2020, Lupus Europe launched a large “Living with lupus survey”. Thanks to the huge participation from patients around Europe, the insights from this survey are largely used. Time has now come for a new survey, with different topics, to add to our knowledge of what it means to live with lupus in 2024.
👤 The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages.
🔗 Click the following link to complete the survey: www.surveylegend.com/s/5h8u
Thank you for sharing your views!
#LupusAwareness #LupusResearch #SLE #LupusCommunity
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