Alain CornetIn the context of EPF’s recent multi-stakeholder conference on Patient Safety, Katharine was asked to tell her story as an example of patient safety in a chronic disease setting. You can read about it on EPF’s blog. Living with Auto-Immune Diseases: A Patient Testimonial
Alain CornetBetter late than never… it is time to introduce our newest board member, Sara Badreh. Sara was elected to the board at our convention in Würzburg. We are delighted to have her on board and we’re sure that she will be a huge asset to our team. As you can see from her photo, Sara […]
Alain CornetLet’s Kick Lupus together in 2017 LUPUS EUROPE would like to extend warm wishes to all its members, partners and supporters. We hope that you all have a wonderful festive season and that the New Year is full of promise and fulfillment. 2016 has been a busy year for us, promising exciting times ahead. We […]
✅ 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
💜 World Lupus Day – May 10 💜
Lupus impacts millions worldwide. Let’s push for better care, research, and early diagnosis.
Support the WHA Resolution on Skin Diseases to improve lives and end the burden.
#LupusAwareness #SkinDiseasesResolution #MakeLupusVisible
#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.
Let's raise awareness of the importance of an early diagnosis
#WorldLupusDay
#MakeLupusVisible
#Lupus100
🦋 #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
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