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A 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 of daily treatment, its negative aspects, the way people cope with it, the influence remission and side effects have on adherence, as well as collaboration with doctors to improve treatment, and what could be done to accept and manage pills for life (technology, coping tactics, tips and tricks, …).

The profile requirements are: to have an official Lupus diagnosis, to NOT have attended the previous patient panel and not yet be heavily involved in a national patient organisation. The participants should have a good working knowledge of English, and be diverse in geographic origin, age and gender. Male or female, young or less so, newly diagnosed or ‘veteran’, moderate or severe lupus, if you are interested, you can apply! The final panelist selection will  be made by selecting  8 or 9 people from the applications received, using diversity as a key selection criterion.

As a prerequisite for attending the panel, volunteers will need to have a 45 minute skype (non directional) interview with Davide Mazzoni, LUPUS EUROPE Co-opt advisor for Research. This interview is NOT a test or selection interview, but will enable the collection of initial responses on a series of questions from the selected panelists. Those interviews, as well as the panel itself, will be recorded and transcribed, but, just like the full panel experience, will be anonymous.
The workshop itself will take place in Brussels mid-March 2016, and last from Friday evening to Sunday afternoon. Travel costs will be reimbursed, with accomodation/meals organised and paid for by Lupus Europe.  Participants need to commit to attend the entirety of the workshop (no partial attendance).

Applications should be sent to the secretariat (secretariat@lupus-europe.org) by December 22, 2015 latest. Candidates should send a short note in English applying for the panel expressing their interest  and add the following critical information : name, address, email, gender, age, type of lupus, current medication and ethnic origin. Answers should be expected before end December.

For any question, please contact Secretariat@lupus-europe.org

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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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