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 […]
📢 Our latest study on pregnancy outcomes in CTD is out! 🤰🤱
🔍 30 years, 465 pregnancies from SLE, SSc, SjS and UCTD
⭐ SLE & active disease increase risks, but HCQ offers strong protection
📖 Read more: https://www.arprheumatology.com/article_abstract.php?id=1573&utm_campaign=ARP+Rheumatology+online+first&utm_medium=email&utm_source=newsletter
@ReumaLeon @ElviraDiezAlv @ARPrheumatology
🎙️ What is the role of pharmacogenetics in personalised medicine?
Listen to our conversation with Stefania Boccia, Coordinator of the project PROPHET, about this initiative & the state of personalised medicine for non-communicable diseases in the EU.
🎧: https://bit.ly/3QAlnaL
Thank you to @LupusEurope for the opportunity
It's a vital and often under-discussed topic, and I'm happy to contribute to raising awareness and fostering open, meaningful conversations alongside patient 🦋 👥
@Felupus @LupusJaen @LupusMadrid
✅ Don't forget to download ⬇️ if you are interested in Treat-to-target in #Lupus 👌
⏳ The Lupus Europe Youth Group Webinar on SEX and #lupus is just around the corner!
🗓 May 3rd | 19h CET
🎙 With Dr @cristianasieiro.
Don’t miss this chance to talk openly about this topic in a safe and informative space!
📩 Register now:
secretariat@lupus-europe.org
Real- world oral glucocorticoid use in SLE: a nation- wide population- based study
31 852 patients
⏩48.3% treated with oral GC
⏩ 12.4% receiving doses> 5 mg⏩ increased risk of complications
⏩13.6% >5 mg were not treated with alternative therapies
https://pmc.ncbi.nlm.nih.gov/articles/PMC11836812/
Off to Amsterdam for my first @LupusEurope board meeting !
🎉 Registration for the EULAR 2025 Congress is NOW OPEN!
🤝 Join the most exclusive event in the rheumatology field in beautiful Barcelona.
🔗 Register today to benefit from our special rates: https://pulse.ly/r4xwodjbru
#EULAR2025 #Rheumatology #ScientificExchange
🫂This month, #KickLupus focuses on the power of support. Because whether you’re navigating lupus yourself or supporting someone who is, one thing is clear: no one should face it alone.
🦋 #Lupus is a lifelong condition that can potentially impact any tissue or organ in the body, affecting many aspects of life.
‼️It can also affect our mental health!
🌈 That’s why finding support is so crucial—it can transform how we cope with lupus, manage this autoimmune condition and thrive in life.
Check out the one in your country on our website and get in touch! www.lupus-europe.org/lupus-members/
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I"m from Portugal 💜 Don't have much suport😢
The Lupus Europe Youth Group Webinar on SEX and #lupus is just around the corner!
🗓 May 3rd | 19h CET
🎙 With Dr Cristiana Sieiro Santos
Don’t miss this chance to talk openly about this topic in a safe and informative space!
📩 Register now:
secretariat@lupus-europe.org
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🚨 Today is #wordday2025! which stands for WOrld Young Rheumatic Disease Day.
🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.
‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.
As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.
🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.
😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.
👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.
Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.
📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.
🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!
Turn to your lupus association for support.
🤗 There are many organisations across Europe that can help you and your child cope with the disease.
More information on #sle in children at #Lupus100: f.mtr.cool/gfhbfdafvv
For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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Herbalist SIMEON 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜o𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇👇 www.facebook.com/doctorsimon1
𝐃octor Droigiangbe u* 𝐦𝐞𝐝𝐢𝐜𝐢𝐧𝐞 𝐩𝐫𝐞𝐯𝐞𝐧𝐭 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐇𝐞𝐫𝐩𝐞𝐬, 𝐥𝐮𝐩𝐮𝐬, 𝐀𝐋𝐒, 𝐓𝐢𝐧𝐞𝐚 𝐕𝐞𝐫𝐬𝐢𝐜𝐨𝐥𝐨𝐫, 𝐂𝐊𝐃,, autism, fibromyalgia, kidney stones 𝐃𝐢𝐚𝐛𝐞𝐭𝐢𝐜𝐬. 𝐀𝐫𝐭𝐡𝐫𝐢𝐭𝐢𝐬 𝐌𝐒, 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞, 𝐬𝐚𝐲 𝐧𝐨 𝐭𝐨 𝐚𝐧𝐲𝐭𝐡𝐢𝐧𝐠 𝐫𝐞𝐥𝐚𝐭𝐢𝐧𝐠 𝐭𝐨 𝐯𝐢𝐫𝐮𝐬 & 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐜𝐨𝐥𝐝 𝐬𝐨𝐫𝐞 𝐨𝐫 𝐭𝐡𝐲𝐫𝐨𝐢𝐝 𝐂𝐚𝐧𝐜𝐞𝐫, 𝐜𝐨𝐧𝐭𝐚𝐜𝐭 𝐡𝐢𝐦 𝐭𝐨𝐝𝐚𝐲 𝐚𝐧𝐝 𝐜𝐮𝐫𝐞 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐟𝐫𝐨𝐦 𝐃𝐢𝐚𝐛𝐞𝐭𝐞𝐬, 𝐇𝐈𝐕, 𝐏𝐢𝐥𝐞 Brain tumor 𝐚𝐧𝐝 𝐦𝐚𝐧𝐲 𝐦𝐨𝐫𝐞✨ FB page below👇👇 www.facebook.com/Droigiangbe-114637101534059/
🔴 Tomorrow is #WORDDAY2025!
🦋 And we will be sharing tips and information on how #lupus can affect children.
Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.
Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.
More information on lupus in children at #Lupus100 (multiple languages):
f.mtr.cool/qrvtyjqmpf
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