ERN ReCONNET questionnaire

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LUPUS 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 linked below to reach as many patients as possible.

The link below goes to the generic survey in English. The LUPUS EUROPE secretariat (secretariat@lupus-europe.org) also has links to the survey in Portuguese, Dutch, Romanian, Italian, German, Slovenian and should soon receive French.

Therapeutic Patient Education needs: Questionnaire for patients

We are asking you to please relay the link through your social media channels and encourage your members to participate.

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Alain Cornet

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    LUPUS EUROPE
    12 hours ago
    LUPUS EUROPE

    🌟 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬 𝐨𝐟 𝐭𝐡𝐞 𝐬𝐞𝐜𝐨𝐧𝐝 𝐝𝐚𝐲 𝐨𝐟 𝐭𝐡𝐞 #𝐋𝐮𝐩𝐮𝐬𝐀𝐜𝐚𝐝𝐞𝐦𝐲𝟐𝟎𝟐𝟒 𝐌𝐞𝐞𝐭𝐢𝐧𝐠❗

    🤩 What an incredible day with insightful sessions and important discussions about #SLE!

    💫 𝐖𝐞 𝐚𝐫𝐞 𝐢𝐧𝐜𝐫𝐞𝐝𝐢𝐛𝐥𝐲 𝐩𝐫𝐨𝐮𝐝 𝐨𝐟 𝐭𝐨𝐝𝐚𝐲'𝐬 𝐰𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐥𝐞𝐝 𝐛𝐲 𝐨𝐮𝐫 𝐂𝐡𝐚𝐢𝐫, 𝐉𝐞𝐚𝐧𝐞𝐭𝐭𝐞, 𝐚𝐥𝐨𝐧𝐠𝐬𝐢𝐝𝐞 𝐏𝐫𝐨𝐟. 𝐀𝐫𝐧𝐚𝐮𝐝 𝐚𝐧𝐝 𝐃𝐚𝐥𝐢𝐥𝐚, 𝐨𝐧 𝐢𝐧𝐜𝐨𝐫𝐩𝐨𝐫𝐚𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭’𝐬 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐦𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭❗

    Stay tuned for tomorrow, where we'll dive deeper into the insights shared!

    📝 Here's a recap of the key moments:

    🫀 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐜𝐚𝐫𝐝𝐢𝐨𝐯𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐚𝐧𝐝 𝐥𝐮𝐧𝐠 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 #𝐥𝐮𝐩𝐮𝐬
    Dr. Bernardo Pons-Estel and Dr. Anisur Rahman tackled the complexities of managing heart and lung complications in #SLE, emphasising early detection and intervention to reduce risk.

    🩸 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐡𝐚𝐞𝐦𝐚𝐭𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐩𝐫𝐨𝐛𝐥𝐞𝐦𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
    Dr Ricard Cervera and Dr Raquel Faria discussed the importance of addressing haematological issues in lupus, including anaemia and thrombocytopenia.

    🌍 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐬𝐤𝐢𝐧 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
    Dr Andrea Doria and Dr Annegret Kuhn highlighted the challenges of treating lupus skin involvement, stressing the role of dermatologists in multidisciplinary care.

    🤰 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐩𝐫𝐞𝐠𝐧𝐚𝐧𝐜𝐲 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬
    Dr Sandra Navarra and Dr Irene Bultink covered the delicate balance of managing lupus during pregnancy, with an emphasis on preconception counselling and close monitoring throughout gestation.

    💉 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐛𝐢𝐨𝐥𝐨𝐠𝐢𝐜𝐬/𝐭𝐚𝐫𝐠𝐞𝐭𝐞𝐝 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐧𝐞𝐩𝐡𝐫𝐢𝐭𝐢𝐬
    Dr. Maria Dall’Era and Dr. Alexandre Voskuyl presented the latest advancements in biologics and targeted therapies, focusing on personalised treatments for lupus nephritis.

    🔬 𝐍𝐨𝐯𝐞𝐥 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬
    The afternoon covered novel therapies, including CAR-T cell therapy, where Dr Ronald van Vollenhoven and Dr Richard Furie addressed the potential and limitations of these emerging treatments for lupus. While CAR-T holds promise, it's crucial to manage expectations.

    🫀 𝐇𝐞𝐚𝐫𝐭, 𝐛𝐨𝐧𝐞𝐬, 𝐚𝐧𝐝 𝐞𝐲𝐞𝐬
    The session on cardiac diseases by Dr Wouter Kok, lupus and bone health by Dr Judith Bubbear, and lupus and the eyes by Dr Joeri de Hoog provided invaluable insights into managing organ-specific complications in lupus patients. Early detection and multidisciplinary care remain critical     ... See MoreSee Less

    🌟 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬 𝐨𝐟 𝐭𝐡𝐞 𝐬𝐞𝐜𝐨𝐧𝐝 𝐝𝐚𝐲 𝐨𝐟 𝐭𝐡𝐞 #𝐋𝐮𝐩𝐮𝐬𝐀𝐜𝐚𝐝𝐞𝐦𝐲𝟐𝟎𝟐𝟒 𝐌𝐞𝐞𝐭𝐢𝐧𝐠❗ 🤩 What an incredible day with insightful sessions and important discussions about #SLE! 💫 𝐖𝐞 𝐚𝐫𝐞 𝐢𝐧𝐜𝐫𝐞𝐝𝐢𝐛𝐥𝐲 𝐩𝐫𝐨𝐮𝐝 𝐨𝐟 𝐭𝐨𝐝𝐚𝐲𝐬 𝐰𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐥𝐞𝐝 𝐛𝐲 𝐨𝐮𝐫 𝐂𝐡𝐚𝐢𝐫, 𝐉𝐞𝐚𝐧𝐞𝐭𝐭𝐞, 𝐚𝐥𝐨𝐧𝐠𝐬𝐢𝐝𝐞 𝐏𝐫𝐨𝐟. 𝐀𝐫𝐧𝐚𝐮𝐝 𝐚𝐧𝐝 𝐃𝐚𝐥𝐢𝐥𝐚, 𝐨𝐧 𝐢𝐧𝐜𝐨𝐫𝐩𝐨𝐫𝐚𝐭𝐢𝐧𝐠 𝐭𝐡𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭’𝐬 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐦𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭❗ Stay tuned for tomorrow, where well dive deeper into the insights shared! 📝 Heres a recap of the key moments: 🫀 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐜𝐚𝐫𝐝𝐢𝐨𝐯𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐚𝐧𝐝 𝐥𝐮𝐧𝐠 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 #𝐥𝐮𝐩𝐮𝐬 Dr. Bernardo Pons-Estel and Dr. Anisur Rahman tackled the complexities of managing heart and lung complications in #SLE, emphasising early detection and intervention to reduce risk. 🩸 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐡𝐚𝐞𝐦𝐚𝐭𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐩𝐫𝐨𝐛𝐥𝐞𝐦𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 Dr Ricard Cervera and Dr Raquel Faria discussed the importance of addressing haematological issues in lupus, including anaemia and thrombocytopenia. 🌍 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐬𝐤𝐢𝐧 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 Dr Andrea Doria and Dr Annegret Kuhn highlighted the challenges of treating lupus skin involvement, stressing the role of dermatologists in multidisciplinary care. 🤰 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐩𝐫𝐞𝐠𝐧𝐚𝐧𝐜𝐲 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 Dr Sandra Navarra and Dr Irene Bultink covered the delicate balance of managing lupus during pregnancy, with an emphasis on preconception counselling and close monitoring throughout gestation. 💉 𝐌𝐚𝐧𝐚𝐠𝐢𝐧𝐠 𝐛𝐢𝐨𝐥𝐨𝐠𝐢𝐜𝐬/𝐭𝐚𝐫𝐠𝐞𝐭𝐞𝐝 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 𝐢𝐧 𝐥𝐮𝐩𝐮𝐬 𝐧𝐞𝐩𝐡𝐫𝐢𝐭𝐢𝐬 Dr. Maria Dall’Era and Dr. Alexandre Voskuyl presented the latest advancements in biologics and targeted therapies, focusing on personalised treatments for lupus nephritis. 🔬 𝐍𝐨𝐯𝐞𝐥 𝐭𝐡𝐞𝐫𝐚𝐩𝐢𝐞𝐬 The afternoon covered novel therapies, including CAR-T cell therapy, where Dr Ronald van Vollenhoven and Dr Richard Furie addressed the potential and limitations of these emerging treatments for lupus. While CAR-T holds promise, its crucial to manage expectations. 🫀 𝐇𝐞𝐚𝐫𝐭, 𝐛𝐨𝐧𝐞𝐬, 𝐚𝐧𝐝 𝐞𝐲𝐞𝐬 The session on cardiac diseases by Dr Wouter Kok, lupus and bone health by Dr Judith Bubbear, and lupus and the eyes by Dr Joeri de Hoog provided invaluable insights into managing organ-specific complications in lupus patients. Early detection and multidisciplinary care remain criticalImage attachmentImage attachment+7Image attachment
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    LUPUS EUROPE
    3 days ago
    LUPUS EUROPE

    🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

    The day was packed with insightful talks and lively discussions on #lupus research and management.

    🦋 Some of the key highlights included:

    ✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
    ✨ Lupus and cancer by Dr Sasha Bernatsky.
    ✨ Lupus and infections led by Dr Bregtje Lemkes.
    ✨ Lupus and vaccinations by Dr Reşit Yıldırım.

    🗣️ Plus, enriching panel discussions on these crucial topics!

    💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

    🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

    🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

    🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

    🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

    𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

    📲💻 twitter.com/LupusEurope

    #LupusAcademy2024     ... See MoreSee Less

    🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam! The day was packed with insightful talks and lively discussions on #lupus research and management. 🦋 Some of the key highlights included: ✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson. ✨ Lupus and cancer by Dr Sasha Bernatsky. ✨ Lupus and infections led by Dr Bregtje Lemkes. ✨ Lupus and vaccinations by Dr Reşit Yıldırım. 🗣️ Plus, enriching panel discussions on these crucial topics! 💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen. 🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE. 🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven. 🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 . 🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today! 𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates! 📲💻 https://twitter.com/LupusEurope #LupusAcademy2024Image attachmentImage attachment+7Image attachment
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    My partner was diagnosed with SLE lupus in 2023,we have to give a try on herbal supplements which effectively get rid of herbal Systemic lupus erythematosus (SLE) condition dramatically. After 13 weeks of her usage, my wife lost touch with reality. Suspecting it was the medication I took her off the corticosteroids (with the doctor’s knowledge) and started her on the lupus natural herbal formula we ordered. It is advisable to always try natural herbs at first because MULTIVITAMIN HERBAL CURE ( www. multivitamincare. org ) neutralizes her SLE lupus which surprises everyone at home.

    I’ve been through a similar journey and understand your concern. Natural alternative remedies by Dr osewen solution home is a game changers. I was struggling with Psoriasis,thyroid , Fibromyalgia and chronic pains for 3 years. Have you tried reaching out to any support group or organization for help.I wholeheartedly recommend reaching out to him through his Facebook webpages : www.facebook.com/103770562521545 Your path to recovery may be closer than you think. Sending love 💕 xx

    LUPUS EUROPE
    5 days ago
    LUPUS EUROPE

    Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

    📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the "Living With Lupus in 2024" survey results.

    🌟 Continuous education and skill development are essential to fulfil our mission 💪.

    ❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

    🗣️ Our sincere thanks also go to all the patients who participated in our "Living With Lupus in 2024" survey.

    🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients' needs.

    ✅ Let's keep getting involved in research! The more patients respond, the more significant and impactful the data will be.     ... See MoreSee Less

    Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven. 📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the Living With Lupus in 2024 survey results. 🌟 Continuous education and skill development are essential to fulfil our mission 💪. ❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe. 🗣️ Our sincere thanks also go to all the patients who participated in our Living With Lupus in 2024 survey. 🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients needs. ✅ Lets keep getting involved in research! The more patients respond, the more significant and impactful the data will be.Image attachmentImage attachment+6Image attachment
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    Congratulations to all of you in Lupus Europe for all the great work you do! 💪👏☝️👌

    LUPUS EUROPE
    6 days ago
    LUPUS EUROPE

    🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

    💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

    🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

    💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

    ‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

    🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being     ... See MoreSee Less

    🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life. 💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being. 🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy. 💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido). ‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care. 🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-beingImage attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send