Alain Cornet
🇮🇸 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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