Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
🇮🇸 Spotlight on Lupus Iceland!
At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍
🇧🇪 Spotlight on Lupus Belgium!
At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website!
👏 Congratulations for your amazing work!
🦋 #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
🧵 THREAD
📢 Our latest study, co-led by Dr @G_O_Daniel & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway.
💎 It also proposes practical solutions to improve health equity & outcomes.
https://www.sciencedirect.com/science/article/pii/S1568997225001478/pdfft?md5=e52c01163825c19d065dfa42a379da04&pid=1-s2.0-S1568997225001478-main.pdf
#1month1study
✅ Check my summary slide ⬇️ on the #obinutuzumab phase 3 (#REGENCY) trial in #lupus #nephritis 😉
🇨🇿 Spotlight on @Revma_Liga!
At our #LupusConvention, our Czech member organisation impressed us with an inspiring poster showcasing their wide range of initiatives for people with lupus. From psychological support to exercise, they cover it all!
Congratulations, & keep it up!
✅ Do you want to know more about topics like fatigue or CAR-T cells?
🎥 Find them all on our website!
🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime!
https://www.lupus-europe.org/videos-on-demand/
✅ Very happy to report that, together with an amazing group of #lupus experts and the help of @LupusEurope, we have reached the milestone where we now have the pilot version of the #lupus #brainfog severity scale (#LBFSS) 👍 and are now entering the validation phase
🇮🇸 Spotlight on Lupus Iceland!
At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.
Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍
📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.
💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.
💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.
👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
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🇧🇪 Spotlight on Lupus Belgium!
During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.
🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.
🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.
Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.
🧘♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.
📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.
🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.
🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.
📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!
💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.
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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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🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.
🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.
🤔 How is this possible? These factors don't cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.
💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.
According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:
🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
🔹 Low health literacy and cultural stigma make treatment adherence harder.
🔹 Living in rural areas limits access to specialised care.
🔹 Financial barriers and social isolation worsen both physical and mental health.
These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.
‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).
👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.
Read the full study: www.sciencedirect.com/science/article/pii/S1568997225001478
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