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!

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3 days ago

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

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www.youtube.com/watch?v=RT2Qtllx2-s
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🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a persons wider context, including these non-clinical factors. 

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

https://www.youtube.com/watch?v=RT2Qtllx2-s

13 CommentsComment on Facebook

Daniel Guimarães de Oliveira - Imunologia Clínica

That's true! Many people with problems are compelled to stop their cures because they do not have the money

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4 days ago

‼️Today is #worldsjogrensday, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.
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‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögrens is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.

5 CommentsComment on Facebook

I know

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1 week ago

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches.

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youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik
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🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches. 

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

https://youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik

4 CommentsComment on Facebook

Wow, it would certainly make an enormous difference in our lives!!! Iron deficiency can be difficult to overcome because of stomach problems but it would certainly be worth trying to get rid of this perennial fatigue.

Natural🌿remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from a deadly disease and neuropathy by Herbalist His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 Dr Osabor herbal home

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2 weeks ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
... See MoreSee Less

👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment