Patient View Survey

Dear 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 […]

Patient stories…

Our 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 […]

EPF news

Input 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.    

Patient Panel dates set

The 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 […]

LupuzorTM enters phase III

LupuzorTM 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 […]

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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
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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
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