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 […]
🦋 According to our "Living with Lupus in 2020" survey, UV sensitivity ranks among the most common and bothersome symptoms for those living with #lupus.
🔊 Join us! Share how this facet of #SLE limits your daily activities and the strategies you use to #KickLupus and UV light
✅ Very happy to report that we have completed the entiere STEP1 of #ENDORSED, the international #consensus definition of #SEVERE #LUPUS by the #DORIS group gathering 50+ potential facets of severity thanks to the international panel of HCPs (step 1a) and patients (step 1b) 👍
✅ Using #ChatGPT to generate a POST-#EULAR2025 summary about #Lupus ⬇️ how did I do that?!? I performed a search for 'lupus' in the online program of the congress🔎 copy-pasted the results in chatGPT and used it to perform a 'thematic analysis' on the results 💪👍 FASCINATING
🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! https://www.lupus-europe.org/emails/
On #ChronicDiseaseDay, our #3TR patient representatives shared what keeps them going: their families, their friends, and the patient communities they’re part of. 💪❤️
👇 Tell us: who do you stay strong for?
#ChronicDiseaseDay #Lupus #MS #Asthma
⏰ Just 1 hour left for our #EULAR2025 highlights webinar!
😨 You haven't registered yet? Don't worry! We have🔝news for you!
✅ You can still catch all the insights live on our Facebook page https://f.mtr.cool/rfbzgadqse
Join us at 18h CET to explore 🗝️ takeaways from the Congress!
🔊Listen to the #eularPARE podcast, "Working with an RMD: Real Stories, Real Strategies".
🎙️Hear inspiring guests share practical tips for managing work life while living with an RMD.
Join here:
Spotify: https://pulse.ly/mo14plakig
Apple: https://pulse.ly/ceantfnfwd
#Rheumatology
🌟Our #EULAR2025 highlights webinar is tomorrow!
👨⚕️Some of the presenters will share the main takeaways from their talks.
🦋Also, some of our volunteers will share their insights from the Congress.
Don’t miss this opportunity!
Register now by ✉️ secretariat@lupus-europe.org
😨 Did you miss our #EULAR2025 debrief webinar?
😮💨 Don't worry! You can watch the full session at your convenience.
Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!
www.facebook.com/LupusEurope/videos/1257813502412444
0 CommentsComment on Facebook
‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.
😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.
💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:
🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.
The need to stay covered and protected from the sun can make these jobs particularly challenging.
🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.
Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.
This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.
For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.
🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.
😊 Share your experiences and how you #KickLupus & UV light in your daily life
0 CommentsComment on Facebook
🟣 Phase 2 of LUPUS-ALERT is now complete!
Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.
🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:
🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care
🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.
💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!
📌 Stay tuned — more to come soon!
0 CommentsComment on Facebook
🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
0 CommentsComment on Facebook
