Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
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 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 […]
🇸🇪 Spotlight on Lupus Sweden!
💜 At our #LupusConvention, they shared inspiring work to raise awareness & build connections. From their children’s book “My mother can have a butterfly on the nose” to national World Lupus Day events & their new SLE awareness pin.
👏 Congrats!
Watch now the 3rd ERN ReCONNET Sharing Good Practice initiative
➡️ https://youtu.be/8ko8sBwDm9U
Experts discussed key best practices for rCTDs: CPMS, advanced diagnostics, LupusGPT, and Personalized Integrative Care.
Moderated by Dr. Rosaria Talarico and ePAG advocate Ilaria Galetti.
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, from daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by @eurordis & make your voice heard
https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
🚨Hurry-up and Register to EMEUNET/YNP joint⏰
Webinar “Lupus nephritis: What do the new guidelines say?” from the Visibility&Global Affairs Sub-Committee.
We hope to see you all there!
Free registration: https://pulse.ly/fiohw15eey
#EMEUNET #YNP #rheumatology #nephrology #lupus
📣 #LupusGPT was at the @eupatientsforum Congress! The largest European event for patient involvement in healthcare, policy & research.
💜Big thanks to @Jeanette_Lupus for her work & to Cathrine Hjelmeset for representing us & showing patient-led innovation!
#EPFCongress2025
✅ Have you ever used #quinacrine for the treatment of cutaneous or systemic #Lupus? Check ⬇️ how this treatment is perceived by the community, in terms of efficacy and safety in our latest paper with #SLICC & CaNIOS members
A Global Survey of Quinacrine Use in Systemic and Cutaneous Lupus Erythematosus
Objective Experiences with the antimalarial quinacrine for systemic and cutaneous lupus erythematosus (SLE and CLE) rema...
doi.org
📑According to Living With #SLE 2020 Survey:
🎓50.7% of people diagnosed before 25 reported that the disease negatively impacted their studies.
@jeanette_lupus @lupusreference et al https://lupus.bmj.com/content/8/1/e000469
#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
🌍 More than 200,000 people live with #lupus in Europe.
🚨 Some #SLE patients have physical disabilities due to the impact of symptoms like fatigue, joint pain, & organ involvement, which could make daily life and work challenging.
#WorldDisabilityDay
#IDPWD
🇸🇪 Spotlight on Lupus Sweden!
💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.
💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.
📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.
🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.
🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.
👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!
🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.
✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.
Your insights can make a difference and help shape future policies that support people living with this condition.
🙏 Thanks for sharing your experience!
www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!
The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.
💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.
🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.
🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.
Try it now: lupusgpt.org/
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🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.
In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:
🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.
🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.
🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.
#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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