Alain CornetAs discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union. To […]
Alain CornetAnd lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here. There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted. The World Lupus Federation, of which LUPUS […]
Alain CornetMay 10th is World Lupus Day What is lupus? Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin. Up to 500,000 people in Europe have lupus. 90% of people […]
Alain Cornet10th of May is #WorldLupusDay and for that occasion #LUPUSEUROPE in cooperation with #LUPUSUK has created a campaign for every day in the month of May. Please feel free to share with everybody you know! In the build up to World Lupus Day, look out for our info-messages on Facebook and Twitter. Here are the first two.
Alain CornetFrom April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE. Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda. A noteworthy result of EPF’s survey on Access to healthcare is […]
Alain CornetAs part of the EPF #Access2030 campaign a petition has been created to ensure that decision-makers are aware of how important people feel healthcare is and that we want it to remain very firmly on the agenda. To read more about the petition and to sign, please click here.
Alain CornetCNN has highlighted lupus and celebrities who have lupus. You can read the article here.
Alain CornetSince his amazing feat Andreas has been busy recovering and getting back to normal life, but he hasn’t forgotten about his lupus supporters and has been working on his final article, telling us all about his fantastic achievement. Lupus New York Marathon Finisher – 06.11.2016 For Lupus Warriors, Lupus Heros, Lupus Scientists, Lupus Family, Lupus Friends, […]
Alain CornetOn Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”. The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international […]
Alain CornetKirsten represents LUPUS EUROPE at ERN meeting in Vilnius For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page. From our recent newsflash: On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania. Please see the short […]
On World Lupus Day, @lupusreference discusses the unmet need of fatigue in #Lupus and how understanding it can lead to better management strategies.
#WorldLupusDay
#DiaMundialDelLupus
❤️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
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
🌟 A heartfelt thank you to everyone who joined us for the "Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist" webinar on #WorldLupusDay!
Your participation made this event a meaningful and enlightening experience.
“Living with #lupus isn’t always visible, but the impact is real.” Meet @AnnemarieS66, battling Systemic Lupus Erythematosus with grace despite facing misconceptions. On #WorldLupusDay, let's shed light on her story and #MakeLupusVisible. 🎥 https://bcove.video/3QzkGPk
🚨 In less than an hour!!!
😃 Don't miss this unique opportunity to learn what young people with lupus need to talk about!
‼️ Also, on Facebook Live!
https://www.facebook.com/LupusEurope
#WorldLupusDay
To celebrate World Lupus Day 🦋
📢 We are calling all patients with SLE
Your voice matters! 🗣️
👉 Participate in our LUPPOS survey to help us better understand your attitudes towards steroids used in SLE treatment.
Thank you @LupusEurope and @GruppoLes for your collaboration!
🚨 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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