Alain CornetDear Members, You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so […]
Alain CornetOur first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future. We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the […]
Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here. The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience. All costs, travel, accommodation and meals are reimbursed. For further information, please click […]
Alain CornetLupuzorTM enters phase III Press release from the CNRS Paris, 15 December 2015 LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS […]
Alain CornetA UNIQUE OPPORTUNITY to meet people living with lupus from around Europe LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities […]
🧠 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
