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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6 days ago
LUPUS EUROPE

Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations - IADPO.

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: globalskin.org/research/about-phase-4
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Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason wed like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations  - IADPO. 

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: https://globalskin.org/research/about-phase-4Image attachmentImage attachment
1 week ago
LUPUS EUROPE

Today is #WorldSclerodermaDay! 🌻

A day that brings together scleroderma communities from around the world to raise awareness and show solidarity with those facing the challenges of this rare, invisible and disabling disease. On this special day, we want to reaffirm that we're here to support you, encourage you and help you find the light bloom.

#BloomWithScleroderma today and always.

Read more about our campaign 👉
fesca-scleroderma.eu/wsd2022/?utm_source=facebook&utm_medium=facebook-feed&utm_campaign=organic-c...
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2 weeks ago
LUPUS EUROPE

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it.

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue.

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

iamfatigued.limequery.org/584745?lang=en
... See MoreSee Less

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it. 

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue. 

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

https://iamfatigued.limequery.org/584745?lang=en

Comment on Facebook

This looks really interesting, thanks. Fatigue is probably the worst aspect of having Lupus. Anything that helps manage that has to be a bonus

Such an endeavour to struggle !

2 weeks ago
LUPUS EUROPE

The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!
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The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias!

Comment on Facebook

Congratulations Dalila Tremarias! Over the moon for you. They’re lucky to have you on board. 💜 👏

Congratulations Dalila 💜

Well done Dalila - so proud of you xx

Well done all of you and thanks .I am amy somers mum

I'm so proud of you!@Amy Somers.miss you much x

Congrats Dalila!!👍😁

What an amazing group of lupies.

Congratulations ❤️

Felicidades dalila

Dalilavan harte gefeliciteerd

Felicitaciones

🌹🌹🌹👍👋👋👋👋

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