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Dear Members and Friends,
As autumn approaches with its crisp air and golden hues, Lupus Europe is excited to bring you a new season of updates, initiatives, and opportunities for our ever-growing community.
Mark your calendars for the Lupus Europe Annual Convention 2024 in the historic city of Bratislava, Slovakia, from October 18-21. This year’s theme, focusing on mental health and lupus, promises to inspire and connect delegates from across Europe in meaningful and insightful ways. For those who haven’t yet registered, there’s still a few days left—don’t miss out!
Additionally, we are thrilled to unveil LupusGPT—a revolutionary, multilingual AI tool designed to answer patients’ questions on lupus. Launched at EULAR 2024, this innovative tool makes trusted, doctor-validated information accessible to all, in nearly any language, without any subscription or login required.
We’ve also seen Lupus100 continue its growth with the addition of Bulgarian, making it available in 16 European languages. This project, worked on collaboratively by expert lupologists and patients, is a testament to the power of doctor – patient collaboration.
In this newsletter, you will also find exciting updates on key projects like the successful Living with Lupus in 2024 Survey which gathered answers from 6014 participants from across Europe, as well as insights from recent workshops and webinars!
Let’s continue to work together in driving positive change for the lupus community.
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Warmly,
On behalf of the Board of Directors,
Jeanette Andersen
Chair of Lupus Europe
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Lupus Europe Annual Convention 2024
Bratislava, Slovakia 18-21 October
From the evening of the 18th of October, the Lupus Europe Annual Convention 2024 will be held in the historic city of Bratislava, Slovakia. The Annual Convention is for Lupus Europe National Member Delegates and it will be a brilliant event, focused on the theme of Mental Health and lupus.
If you are a National Member Delegate and have not yet registered, don’t delay! Send an e-mail to secretariat@lupus-europe.org and secure your spot before registrations close in a few days!
As always, a Convention Report will be available for all shortly after the event.
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LUPUSGPT
At the occasion of EULAR 2024 LUPUS EUROPE launched LupusGPT! LupusGPT is an innovative, multi-lingual AI tool designed to answer patients’ questions about
lupus. It relies on a restricted, carefully vetted library of documents, selected by specialist lupus doctors and patients, to ensure that the answers provided are reliable. Although the tool’s interface is in English, LupusGPT can answer questions in almost any language
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LupusGPT can benefit patients, doctors, and anyone interested in lupus, as it allows users to get direct, dynamic answers to their questions through a dialogue format. The AI’s knowledge base is sourced from verified information only.
LupusGPT is fully open and free. No subscription or login are required to use the tool.
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What tips are there for using LupusGPT?
The AI will respond in the language in which the question is asked.
– If LupusGPT does not provide answers to certain questions, users can try rephrasing the
question slightly.
– If LupusGPT does not have the answer to a specific question, it will let users know rather
than giving an inaccurate response.
– If you have any feedback, just let us know
Go to LupusGPT or scan the QR code to access the tool
If you have any feedback on LupusGPT, e-mail: secretariat@lupus-europe.org and let us know how it worked for you, in your language!
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Lupus100 is expanding!
Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus 100.org has also been endorsed by ERN ReCONNET SLE Working Group doctors.
Lupus100.org is continuously expanding. With another recent language addition in Bulgarian, Lupus100.org is now available in 16 European languages. Translations are validated by native speaking patients and rheumatologists specialised in lupus.
As a result, it is a unique, free of charge, reliable and accessible source of information on lupus.
- Visit the website to be convinced!
- Spread the news about Lupus100
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Participate in the LUPPOS Survey!
Help health professionals understand patients’ attitudes towards steroid use in lupus treatment. We are pleased to disseminate news about a new survey: LUPPOS (LUpus Patients’ Perspective On glucocorticoidS). This survey aims to better understand the habits and experiences of people with lupus regarding the use and withdrawal of glucocorticoids (steroids).
Glucocorticoids are a cornerstone in the treatment of lupus, but we know little about how patients feel about their use. With your participation, the hope is to gather insights that may help improve the management of lupus.
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Who designed the LUPPOS survey?
The LUPPOS survey was created by an independent group of young, lupus researchers under the EMEUNET Peer Review Programme.
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Key Information:
– The survey contains 35 questions and is both voluntary and anonymous.
– You can pause and return to the survey at any time.
The survey is available in English, French, Spanish, Portuguese, and Italian.
Participate and share your insights!
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Have you watched our latest webinar?
Watch this exciting webinar titled “EULAR 2024 Debrief, as viewed by Lupus Europe’s PAN Members” to get the latest news and feedback from EULAR 2024 from a doctor and patient’s perspective, in lay language.
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Abstract Workshop
At the end of August 2024, Lupus Europe volunteers participated in an intensive abstract workshop in Leuven.
The workshop combined theoretical sessions that included statistics with practical exercises! Participants worked to develop abstracts based on the “Living With Lupus in 2024” survey results.
Continuous education and skill development are essential to fulfil Lupus Europe’s mission.
A huge thank you to the valuable input and excellent work of all workshop attendees!
Together, we have already drafted a number of abstracts that could be submitted to medical conferences, helping raise awareness of patient views.
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Living with Lupus in 2024 Survey!
Many thanks to all 6014 participants to our Living with Lupus in 2024 survey, which took place in April-May. It is thanks to this massive participation that we can bring credible answers to many questions still unanswered about lupus. This huge amount of data has been analysed in details and discussed by lupus Europe Patient-experts end August. We are now working together, patients and doctors, to draw conclusions that can be shared with the scientific and medical community.
I cannot insist enough on how important it is that we keep a high participation rate to these surveys. While the voice of one, or even a hundred, can be ignored as anecdotal, the voice of 6000 is clear and loud. Each single participant joining the choir helps bringing convincing evidence and drive change. THANK YOU!
Alain Cornet
Organisation Coach
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