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from LUPUS EUROPE 10 MAY 2023
WORLD LUPUS DAY
Dear Members and Friends,
Spring is finally here – nature is blossoming and as usual this also means a tremendously busy time for Lupus Europe. After a very successful first ERN ReCONNET Congress and Board of networks meeting from April 20-24 in Brussels, we had our Annual Lupus Europe Convention in Lisbon from April 28th to May 1st. This year we had a surprising number of participants (many of them new) and we had some good discussions on the topic of Volunteering and a lot of networking. The feeling of being a strong family is greater than ever. We are in the process of writing the Convention report and will share it with you all very soon. In the meantime, World Lupus Day is here, and we wanted to share what we have been working on for the past year or so with you…
On behalf of the Board of Directors, Jeanette Andersen
Chair of Lupus Europe
At the occasion of World Lupus Day 2023, Lupus Europe is delighted to announce the launch of the multi-lingual website of Lupus100!
People with lupus often turn to the internet to find information about their disease. However, quality of information on the internet is often unreliable, which can lead to confusion, anxiety, and incorrect actions. Lupus Europe experience is that many people in Europe either do not speak English or do not speak English at the level required to understand complex medical concepts. Lupus patients need access to quality information about lupus. To address these issues Lupus Europe has launched lupus100.org, a multi-lingual website that provides access to reliable and accurate information about lupus in many European languages!
The French book “lupus en 100 questions” was used as a source of inspiration for the project. The first step was to create an English version of Lupus100. This was achieved by working with the French book’s original authors and members of the Lupus Europe Patient Advisory Network (PAN) to adapt and upgrade the original questions, translating them into international English and to also change any French specific questions into relevant top questions for patients, selected by the Lupus Europe PAN. The resulting English master document was distributed to ERN ReCONNET SLE Working Group lupus specialists and PAN members and their feedback was incorporated. This master version was then put online as a starting point for an ambitious multi-lingual translation, which was then carried out by Doctor-Patient native speaker teams around Europe.
The English website was launched in English at the European Lupus Meeting in October 2022 and has since received 26,000 visits. On the occasion of World Lupus Day, Lupus Europe is launching the multi-lingual website of Lupus100, with 11 languages currently available: English, Danish, German, Spanish, French, Italian, Dutch, Romanian, Finnish, Greek and Ukrainian. Many more languages will be added in the coming months with the aim of providing lupus100 in the native languages of more than 95% of the European population.
The Lupus100 website is a completely free resource that contains valid information about lupus and has been written in a patient-friendly language. Lupus patients can access Lupus100 in their native language, eliminating a significant barrier to accessing quality information about lupus.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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