IAPO congress (day 2) – Anne Charlet

Hello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage).  We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo.    UHC is a global project with the goals : health […]

Members – Save the date

LUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…

IAPO congress – Anne Charlet

HI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference!   From www.iapo.org.uk  “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]

IAPO congress 9-11 April (press release)

Patients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]

World Lupus Day – W.H.O. petition

In one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 weeks ago

🚨 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
... See MoreSee Less

2 weeks ago

‼️ #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
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its 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.

🙏 Dont 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: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ 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
... See MoreSee Less