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 […]
Alain CornetAt the recent American Congress of Rheumatology in San Fransisco this week, we received fantastic news on two promising trial results. 1. AstraZeneca Phase IIb Anifrolumab 300 mg showed positive results, where it produced a response in 34.4 percent of patients after 169 days of treatment and this rose to more than 50 percent after […]
Alain CornetThis is just a reminder that the December deadline for patient stories is fast approaching. If you are a member of one of our patient organisations and want to share your story please send it to katharine@lupus-europe.org
Alain CornetEPF is launching a second consultation on a draft position on defining and measuring access to healthcare. The position paper was developed with the working group on access. The first consultation was held in September/October. Lupus Europe is involved in this working group and your input to the consultation would be much appreciated if you […]
Alain CornetThe European Patients’ Forum launched their Patient Empowerment Campaign earlier this year. Here is the video accompanying the campaign and showing what patient empowerment might mean for different people.
Alain CornetUntil the end of the month, the British Medical Journal has a special free access area with a focus on Lupus. Please click here to view.
Alain CornetVisit the LUPUS EUROPE YouTube channel and see the videos made during last year’s Patient Panel in Brussels!
📢CALLING all patients with Lupus 🦋
🗣️Your voice matters!
👉 Participate in our LUPPOS survey to help us better understand your attitudes towards steroids used in SLE treatment
⬇️Links available in comments
@LupusEurope @Felupus @LupusMadrid @Lupusreference @lupuscyclopedia
✅ Now a related question for NON-SEVERE #Lupus manifestations. Let's say #pericarditis. Do you typically do an mPred infusion in that case? If so how much?
NB: X offers only 4 choices so please don't vote if you're not a doctor 🙏 I will show the results tomorrow anyway.
✅ Management of REFRACTORY #LUPUS ⬇️
#Lupusawareness month
🚨𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗
🕒 𝐀𝐜𝐭 𝐧𝐨𝐰—don't wait until tomorrow❗
🇪🇺 Help us capture the diverse experiences of individuals affected by #lupus across Europe.
🌐 Available in 21 languages.
🧵Find your preferred one in this thread ⤵️
En el #DiaMundialDelLupus, @gladel_latam y @LupusEurope invitan a participar en una ENCUESTA que busca comprender cómo es la vida de los pacientes con lupus en Latinoamérica en 2024, disponible hasta
mayo/2024.
👉 https://lnkd.in/d3ZU6dGf
¡Gracias por tu colaboración!
⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits & career development to maintaining family relationships and social activities.
✅ Complete this survey & help us understand and show the real impact of lupus
https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
✅ Happy to report that we are moving forward to #SLAKE STEP 4 👍 The international panel of experts, PANs from @LupusEurope and @Lupus_Chile + the members of the @ern_reconnet #Lupus group are triaging the preliminary bank of 500 questions, to retain only the essential ones 👌
#DiaMundialDelLupus @gladel_latam y @LupusEurope invita a los pacientes con #LES a la encuesta #Viviendo con #lupus para como les afecta el #lupus
@PanlarLeague @PanlarJ @redasopan @lupusalua @LupusPeru @Lupus_Chile @GLupusColombia @lupus_mexico
🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗
📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.
🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.
🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.
‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.
✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.
🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.
🌐 Available in 21 Languages:
🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
🇩🇰 Danish s.surveylegend.com/-NqmjTjyUXHGLMmAu5qS
🇩🇪 German s.surveylegend.com/-Nr0_sVBruuAHJTsHkuE
🇬🇷 Greek s.surveylegend.com/-Nr5KNkcBGDrsYl1F1xG
🇪🇸 Spanish s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs
🇬🇧 English s.surveylegend.com/-NqgyR5b7jLpCyBwEssv
🇪🇪 Estonian s.surveylegend.com/-Nt145Q5s02kLYdspFDs
🇫🇷 French s.surveylegend.com/-NrWK4Io8HFYwgd_JF9W
🇮🇹 Italian s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0
🇳🇴 Norwegian s.surveylegend.com/-NrQBaJNQ4HcwZblYzh5
🇱🇹 Lithuanian s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
🇳🇱 Dutch s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
🇵🇱 Polish s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP
🇷🇴 Romanian s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
Russian s.surveylegend.com/-NtkhreGgEglDg9AeMfH
🇸🇮 Slovenian s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
🇫🇮 Finnish s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
🇺🇦 Ukrainian s.surveylegend.com/-Nt1t0lpqlsn9jRPHe-3
🇧🇬 Bulgarian s.surveylegend.com/-NuOC4mQDrt8udTrqS85
🇵🇹 Portuguese s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi
🇭🇺 Hungarian s.surveylegend.com/-Nucu0zQ8je0kzInRWb8
0 CommentsComment on Facebook
‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.
⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.
✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.
🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.
🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.
🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
1 CommentsComment on Facebook
♦️ Few days left to fill the Living With Lupus in 2024 survey!
✍🏻 Izpolnite anketo.
🔊 Delite z vašo skupnostjo.
🙏 Help us achieve more answers to ensure the Slovak population is represented in the results
s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
#lupusawarenessmonth
0 CommentsComment on Facebook
🦋 #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.
0 CommentsComment on Facebook
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