Alain CornetStene Prize Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic. The winner receives a prize money of EUR 1,000 is awarded during the Opening Plenary Session at the Annual EULAR Congress and is invited to the congress dinner. In addtion, […]
Alain CornetSAVE THE DATE 2nd EULAR Young PARE youth meeting Friday 21 October – Sunday 23 October 2016 Corsendonke de Linde, Retie, Belgium This email serves for you to block the dates in your calendar, for when our 2nd EULAR Young PARE youth meeting will take place. The location is Corsendonke de Linde, Retie, Belgium. Please share this email with […]
Alain CornetHere is a video featuring Claudine Goyens (who has also written a patient story for LUPUS EUROPE) who encourages us to submit our story for World Arthritis Day. For more information on World Arthritis Day and the stories, please click here. The deadline for submission of stories is 29th July 2016.
Alain CornetHere is an overview of the common World Lupus Day campaign compiled by the World Lupus Federation on the extent and spread of the joint World Lupus Day Campaign. Duane Peters, who has been coordinating the WLF campaign, has told us that the response received has been excellent, especially the results of social media efforts. News about the […]
Alain CornetAs part of our initiatives directed towards youth, trustee Jeanette Andersen, who is responsible for youth related work, has set up a LUPUS EUROPE YOUTH group on facebook. Here is what she has to say about the group. “A group for all young people (aged 18-35) with lupus in Europe. Whether you have a youth group […]
Alain CornetHere is a video extract from an interview with Anne Charlet, vice-chair LUPUS EUROPE, speaking to MedTech about her daughter living with lupus. [youtube https://www.youtube.com/watch?v=eeF5or2K168&w=560&h=315] You can see Anne’s full World Lupus Day interview here.
🧠 Brainfog is one of the most invisible symptoms of lupus, and it still has no official scale.
Prof. @LupusReference & LBFSS team, with the support of Lupus Europe, are changing that—and they need YOU.
📲 Fill the survey. Let’s make brainfog visible.
🔗 https://lupusresearch.limequery.org/697679?lang=en
🦋 Do you have cutaneous #lupus?
💻 In that case, you cannot miss this webinar organised by @ern_reconnet!
Register now for the 🆕@ern_reconnet #webinar “From basics to updates for cutaneous lupus erythematosus (CLE)” with Dr François Chasset moderated by Dr Maarten Limper.
🗓️May 14th - 16 CEST
✍️Register here🆓http://bit.ly/4dpRAfT
✅ Don't forget to participate to the #lupus #brainfog study ⬇️ It's simple & can help other patients a lot. We simply ask you how OFTEN and STRONGLY you have #brainfog and more importantly what are the 'FEELINGS' and 'IMPRESSIONS' you have during your brainfog episodes
❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.
However, there's something 🗝️that we also need to show.
🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life
🦋 Today on #WorldLupusDay, we shine a light on childhood-onset SLE #cSLE Early diagnosis, better treatments, and global awareness can transform young lives 🌟
🤝Let’s stand together to support children living with lupus 💜 #Lupus #LupusAwareness #PediatricRheumatology
It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's 🔝dangerous & frequent complications.
Routine checkups➕available treatments make it possible for 60–70% of patients to achieve complete or partial remission
#WorldLupusDay
#Lupus100
Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100
✨What a wonderful way to raise awareness!
Giving voice to patients is crucial to truly understand the real impact of #lupus. Empowering #PROs helps bridge the gap between clinical perspectives and lived experiences.
Proud to be part of #3TR!
#WorldLupusDay
#Lupus affects millions but is often misunderstood. On #WorldLupusDay, #3TR unites to #MakeLupusVisible.
Blanca Rubio, @LupusEurope patient representative, discusses how #PROs can transform care and improve treatment.
👉 Watch: https://3tr-imi.eu/research/patient-reported-outcomes
🦋 #WorldLupusDay is coming to an end!
❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.
🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.
🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.
🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.
🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.
💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.
#WorldLupusDay
#Lupus100
0 CommentsComment on Facebook
🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.
Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469
And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!
lupus100.org/en/100-questions#Challenges
Need more? Check out #LupusGPT! lupusgpt.org/
#WorldLupusDay
#Lupus100
2 CommentsComment on Facebook
🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.
It affects not only patients but also their loved ones.
Do you want to know what the first symptoms of #lupus are?
Visit #Lupus100 and #lupusgpt and find out!
Getting to know the disease is key for an early diagnosis.
lupus100.org/en/questions/what-are-the-first-signs-of-lupus
lupusgpt.org/
#WorldLupusDay
#MakeLupusVisible
3 CommentsComment on Facebook
