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from LUPUS EUROPE DECEMBER 2020
Dear Lupus Europe Friends and Members,
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.
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 Are Moving!
For more than 30 Years, LUPUS EUROPE has been a UK based unincorporated Charity. While this has served us well for the past, it became clear that issues around Brexit and the significant growth of our organisation on the continent required an adjustment. On November 29, 2020 the Council of LUPUS EUROPE has ratified at unanimity the move of LUPUS EURPOPE to Brussels, the capital of Europe. Our new official location will be 250 meters away from the European Commission, rue d’Egmont 11 – 1000 Brussels, also very close to several of our partner patient organisations, like EPF and Eurordis… While this is a significant undertaking and legal change, LUPUS EUROPE will remain fundamentally unchanged: same members, same people, same enthusiasm… to reach the same vision: A better life for all people living with lupus in Europe, until we reach a world without lupus! We are finalising the administrative steps of the move during the month of December 2020 and will be operating fully in the new entity as from January 1, 2021… HAPPY NEW YEAR!
In our closed Council session/General Meeting BOPRMD – Lupus group from Bulgaria and 3majmy się razem – Lupus group from Poland were elected as new members into the Lupus Europe family and the Lupus group Crveni Leptir from Croatia has been accepted as associate members and will apply for full membership in 2021. Annemarie Sluijmers, who´s term ended this year, reapplied and was elected for a second term on the Board. Kirsi Myllys, who´s term also ended this year did not reapply. She has done a lot of great work for Lupus Europe in the past seven years and will be dearly missed, although she will still work in the Patient Advisory Network.
We had two closing lectures as parallel sessions on Sunday the 29th. 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.
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!
At the first constituting Board meeting after the Convention the following roles were distributed like this: Chair, Jeanette Andersen, Vice chair, Anne Charlet, Secretary, Annemarie Sluijmers, Treasurer, Elfriede Wijsma and Director, Marisa Costa. The new Board consists of five Directors (formerly trustees), two Co-opted to the Board and three Admin supports. Here is the new Board of Directors of Lupus Europe ASBL
From top left corner to bottom right: Annemarie Sluijmers, Secretary, Jeanette Andersen, Chair, Klaudia Kępa, Co-opted, Anne Charlet, Vice-Chair, Marisa Costa, Director, Amy Somers, Admin support, Cassandra Alexis, Co-opted, Elfriede Wijsma, Treasurer and Zoe Karakikla-Mitsakou, Admin support. Unfortunately, our General Secretary, Alain Cornet, is missing on this screenshot.
New Pages on our Website
During the past month we have added some new and very interesting features on our website. Under the Me & Lupus section you will now find an Info Center, where you can find some key information and links that we found particularly relevant for people living with Lupus in Europe. This page will be updated regularly, so keep an eye on it 😉 As you know we need new and better treatments for Lupus. The only way to get this is by conducting clinical trials. We encourage all Lupus patients to take part in these trials and now you have an easy way to find a clinical trial near you. Simply go into our new section called Lupus Clinical Trials, choose your type of Lupus, Systemic, Nephritis or Cutaneous. From here you will be led to a search page on Antidote.match. Answer a few questions and voilà, you can see which Lupus clinical trials are taking place near you.
How YOU can help Lupus research in a very simple way
We all know how much more needs to be understood about Lupus and its impact on our lives. Numerous doctors, scientists or social researchers are engaged in research programs with the goal of collecting information leading to a better quality of life, better information or better treatments for all people living with Lupus. But unless we speak up, by answering those surveys, they won’t be able to collect the quality information they are searching, and their efforts to help our community will be vain. YOU CAN HELP, and join the research effort, by dedicating a bit of your time to answer questionnaires or take part in research that is run by trustable, no n commercially focused researchers. To help you do this, LUPUS EUROPE has created on its website a “survey center”, where we have placed links to various quality surveys that are currently active, that we recommend you take part in. Make this your 2021 resolution: regularly check our survey center, and take part in all applicable surveys, so that our scientific community can help YOU have a better life and better treatments. Start here
Do you want to support
actively the development of new Lupus treatments?
One of the key strategic objectives of Lupus Europe is that people with Lupus participate in, and benefit from, Lupus research. We need better treatments and for those treatments to emerge, we need patients that can engage with researchers (academics and industry), as well as with the European Medicines Agency (EMA). This is one of the roles of our Patient Advisory network (PAN). For 2021, we are searching 2 to 4 additional members for the PAN, and 3 patients that would be on standby to support the EMA when we receive requests for support. PAN members need to have Lupus themselves, and our key need is for people having a Lupus that is not in “long remission” or “dormant”. To know more about the PAN, follow this link. For the support to EMA, we are looking for people with cutaneous Lupus, systemic Lupus and Lupus nephritis that have not advised industry in the past 3 years, have no conflict of interest, and are nationals living in an EU country. If you are interested to help, just send a message to Amy here and we will follow up with you.
On behalf of the Lupus Europe Board,I would like to send you all seasons greetings and wish you a happy and hopefully disease-free New Year! Jeanette Andersen, Chair of Lupus Europe
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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