Lupus Europe had its annual Convention from November 26-29. We were supposed to all meet in Bratislava, Slovakia, but because of the times we had to change everything into a Convention in the clouds instead. We chose to see this as an opportunity to meet with friends from all around the world, who normally cannot travel to our Convention. Many of our sessions were livestreamed on our Lupus Europe Facebook page, which turned out to be a huge success! At the moment our Convention posts have reached almost 33.000 people around the world!

This year has been marked by the Coronavirus, but we didn´t want a Convention to stand in its shadow. That’s why we had a pre-Convention session about Lupus and Covid with Dr. Pedro Machado, who is an Associate Professor & Consultant Rheumatologist at University College London (UCL) and University College London Hospitals (UCLH), in London, UK. His research interests include the investigation of new therapeutic strategies and the assessment and prediction of outcomes in rheumatic diseases, with a focus on Myositis and Spondyloarthritis. More recently he has developed an interest in COVID-19 and its impact on patients with rheumatic diseases. He is the Chair of the EULAR Standing Committee of Epidemiology and Health Services Research (SCEHSR), and a member of the “EULAR COVID-19 Database” and “COVID-19 Rheumatology Alliance” Steering Committees. Dr. Machado gave us a lot of information about Covid-19 and autoimmunity and answered a lot of questions.

On November 27, we started the day with a review of our 2020 achievements and a presentation of our 2021 Plans. We heard from Lupus groups in the USA, Latin America, Russia, Mauritius and Indonesia. We have much to learn from each other and not least many ways we can collaborate in the future.

Even though we had to meet virtually we still believe it´s important to socialise. We tried to achieve this by having meet and greet sessions after our programme on both the 27th and the 28th. It was really great to talk with all our “old” friends and meet some new ones too!

On the 28th we had a session with Prof. Laurent Arnaud, who is a professor of Rheumatology at the Department of rheumatology, University Hospitals of Strasbourg and French National Reference Center for Rare Auto-immune diseases. His main research interests focus around the development and systematic evaluation of biological and immunomodulatory treatments for systemic diseases, with particular interest in the pathogenesis, diagnosis, and treatment of Systemic Lupus Erythematosus and the antiphospholid syndrome. In this session he gave us an elaborate overview of Lupus in 2020 and answered all the questions about Lupus that we never dared ask before.

Later that day our members got the chance to meet some of the partners that Lupus Europe collaborates with on a regular basis. Organisations like EPF, FESCA, ERN ReCONNET, Eurordis, Sjögren Europe and PARE are great resources of information, help us promote the cause of people with autoimmune diseases and influence the European Commission.

We had two closing lectures as parallel sessions on Sunday the 29th. The first parallel session was led by Dr. Meelad Habib about Skin and aesthetic care. Dr Meelad Habib, a young very involved dermatologist, talked about the different presentations of skin. He explained three types of Skin Lupus: acute, subacute and chronic skin Lupus and two very rare skin Lupus: Chilblain and Profundus. He pointed out the characteristics of skin Lupus. He showed a special skin Lupus case (Profundus). He treated it by filling up a dimple caused by Lupus Profundus with the patient´s own body fat. He pointed out that this, or any other cosmetic surgery can only be done, when the patient has an inactive Lupus, and the treatment is done by a multidisciplinary team. He also showed the advice for protection. After the presentation Dr. Habib answered all questions, some of which he couldn’t answer because more study should be done. He suggested one of the questioners to ask the Dermatologist in her/his own hospital.

The second parallel session was by Prof. Richard Furie MD, Chief of the Division of Rheumatology at Northwell Health, New York, is a Rheumatologist whose activities for the last several decades have focused on patient care, physician education, and clinical research in the area of anti-rheumatic drug development. He led us on a journey through the immune system of a Lupus patient and the way new research tries to solve the riddle of the disease. This was a very complex and extremely interesting session, where prof. Furie tried to give us his expectations for the future and answered a ton of great questions from the audience.

Thank you to everyone who joined us in the clouds! All in all, we had a wonderful Convention, but we are really looking forward to seeing you all face-to-face next year in Bratislava! Remember that many of the sessions are still available on the Lupus Europe Facebook page!

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
4 hours ago

✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/

🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
... See MoreSee Less

✅ Yes! As many of you guessed, the October theme of the #KickLupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #KickLupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

https://lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #LupusGPT in your preferred language! https://lupusgpt.org/

🇩🇰 https://lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 https://lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 https://lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 https://lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 https://www.rhumatismes.net/index.php?id_q=863
🇮🇹 https://lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 https://lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 https://lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 https://lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 https://lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 https://lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupusImage attachmentImage attachment+7Image attachment

1 CommentComment on Facebook

Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus

4 days ago

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan  and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care.

https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
6 days ago

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health!
... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!

3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

1 week ago

🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay
... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Dont smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDayImage attachment

1 CommentComment on Facebook

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.