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 Dear Lupus Europe friend,
Thank you so much for your participation to LUPUS EUROPE’s 2019 Survey and for leaving your email so we can indeed stay in touch with you.
We have just closed the survey with no less than 3542 answers. This is truly a superb result. Thank you! The team is now collating the responses to best understand and form conclusions from the information that you have provided. This will be a big exercise, as firstly we need to translate your input from 14 languages into English…. but thankfully, we have volunteers from each of these countries ready to help, and a central team of 5 other volunteers to crunch the data…
Unfortunately, we cannot come back individually to those of you that have placed a comment or question at the end of the survey, as we have no way to connect survey answers with your email address… good for your privacy, but not for us to easily reply. Please be sure that no input will be ignored, even if we can’t tell you personally.
As we dig into the technical part of the survey, we also start to get ready with our next event, which will be a Patient Panel on “My experience taking part in a Clinical trial“. Lupus Europe’s patient panels are taking place over a weekend, from Friday evening to Sunday after lunch, and bring together 10 to 12 selected patients from all  over Europe to discuss a topic of high interest for the lupus community. The meetings are organised by people living with lupus, for people living with lupus. You will be among friends exchanging experience and thoughts on how to build a better life for people with lupus in Europe.
The critical condition to apply for this panel is (a) to have lupus yourself (b) To have a fair (not perfect!) ability to interact in English and (c) to have direct experience of taking part in a clinical trial in Europe (Clinical trials are the procedures whereby selected patients are administered a new active substance and others a placebo to see if the new drug delivers better results than the current standards of care). If you are interested, please send a simple email application to secretariat@lupus-europe.org mentioning your name, email, age, type of lupus, country/town and a few words about yourself. The final selection will seek to make the group as diverse as possible.
Finally, Lupus Europe is part of a consortium with several European doctors, applying for European Funding for a research on monogenic Childhood onset systemic lupus. While we are still awaiting news to see if our project is approved or not, we are trying to build a short list of Children/Teenagers living with lupus that would be ready to be interviewed by one of our volunteers (also someone living with lupus), in their own language, to better understand the impact on their own and their family lives. If you are in this situation, it would help us very much if you could also send us a short email, so that we can contact you if the project is funded. Please send an email to secretariat@lupus-europe.org mentioning your name, email, current age of the child/teenager, age at lupus onset, and country/town. Upon approval of the project, we will then come back to you to check your availability for a friendly chat on the topic.
I hope some of these opportunities will raise your interest. Thank you again for participating to LUPUS EUROPE’s research. Alone, we can’t do much, but together, when 3,542 of us respond to a survey, we contribute new knowledge to research and kick lupus a little further away.
Enjoy the summer (with enough sun lotion)
Alain Cornet
General Secretary
LUPUS EUROPE
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