in only 2 days, the INTEGRATE and  ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that extra feedback by answering the surveys if you have not done yet, and by forwarding to your lupus friends… The information you will provide will be analysed by a multi-functional team, in which LUPUS EUROPE is represented, to trigger action, influence projects and/or guide decisions.

INTEGRATE SURVEY:
The survey is part of the INTEGRATE project (www.integrate-sle.eu), a project funded by the European Commission involving the University of Pisa (Italy), the University of Dusseldorf (Germany) and the Sant’ Anna School of Advanced Studies (Italy).
The aim of the project is to map the needs and expectations of patients with SLE and the rheumatologists involved in their care and management in order to design strategies integrating both points of view, with the final goal to improve management and self-management of the disease.
As SLE patient you have been invited to participate to the survey, through the LUPUS EUROPE association or your clinician, to give voice to patients with SLE.

To complete the survey (in English, Italian  or German (revised)), please follow this link https://www.integrate-sle.eu 
Thank you in advance for providing your feedback by  15th February 2019!
Your participation and your time will be really appreciated and it will surely contribute to the success of the initiative.

 

If you have some timle left, also complete the ERN RECONNET Survey :
RECONNET is the European Reference Network on rare and complex connective tissue diseases. It brings together Healthcare Providers and patients to improve the quality of care, the activity of the physicians, and the empowerment of patients across Europe. The survey collects simple feedback on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare. It is available in Dutch, English, French, Italian, German, Portuguese and Spanish:
Dutch : https://goo.gl/forms/jnhl45rosttSLXUt1
English: https://goo.gl/forms/eK4v5ziNGJqRkRsr2
French: https://goo.gl/forms/q6mkhu4cl3k5YKZq1
Italian: https://goo.gl/forms/ps9uzr4piTdperyK2
German: https://goo.gl/forms/TNZRBvCFFZ3tIHon1
Portuguese: https://goo.gl/forms/UMV0tvXUFBW0wp0T2
Spanish: https://goo.gl/forms/MHgBfBRjlLVMVZeJ3

Remember that these surveys have limited availability and time is of the essence, so thank you for your prompt feedback.

THANK YOU

LUPUS EUROPE’s Board

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1 hour ago
LUPUS EUROPE

🔊 Few days left for #RareDiseaseDay!

🌎 Join us and raise much-needed awareness to get early diagnoses for people who live with a #raredisease.

⬇️ You can download the materials done bRare Disease Dayay at buff.ly/4bMe753

#ShareYourColours
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🔊 Few days left for #RareDiseaseDay!

🌎 Join us and raise much-needed awareness to get early diagnoses for people who live with a #RareDisease.

⬇️  You can download the materials done bRare Disease Dayay at https://buff.ly/4bMe753

#ShareYourColours
5 days ago
LUPUS EUROPE

🔊 Calling all #lupus patients!

🗣️Your voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference 🌍.

📣 ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients.

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

🎯 This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way.

🌟 Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

📚 The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

👉 If you're a Lupus patient, we invite you to participate in the survey, available in 14 languages.

🇩🇰 Danish: bit.ly/SLEStories_Danish
🇳🇱 Dutch: bit.ly/SLEStories_Dutch2
🇬🇧 English: buff.ly/3vbkRss
🇫🇮 Finnish: bit.ly/SLEStories_Finnish
🇬🇷 Greek: bit.ly/SLEStories_Greek
🇮🇸 Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹 Italian: bit.ly/SLEStories_Italian
🇱🇹 Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱 Polish: bit.ly/SLEStories_Polish
🇵🇱 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸 Spanish: bit.ly/SLEStories_Spanish
🇸🇰 Slovak: bit.ly/SLEStories_Slovak
🇫🇷 French: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French
🇩🇪 German: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German

💪 Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

🌟 Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe.

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
... See MoreSee Less

🔊 Calling all #lupus patients!

🗣️Your voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference 🌍.

📣 ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients. 

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

🎯 This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way. 

🌟 Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

📚 The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

👉 If youre a Lupus patient, we invite you to participate in the survey, available in 14 languages. 

🇩🇰 Danish: https://bit.ly/SLEStories_Danish 
🇳🇱 Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧 English: https://buff.ly/3vbkRss 
🇫🇮 Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷 Greek: https://bit.ly/SLEStories_Greek 
🇮🇸 Icelandic: https://bit.ly/SLEStories_Icelandic 
🇮🇹 Italian: https://bit.ly/SLEStories_Italian 
🇱🇹 Lithuanian: https://bit.ly/SLEStories_Lithuanian 
🇵🇱 Polish: https://bit.ly/SLEStories_Polish 
🇵🇱 Portuguese: https://bit.ly/SLEStories_Portuguese 
🇪🇸 Spanish: https://bit.ly/SLEStories_Spanish 
🇸🇰 Slovak: https://bit.ly/SLEStories_Slovak 
🇫🇷 French: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French 
🇩🇪 German: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German 

💪 Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

🌟 Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe. 

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
6 days ago
LUPUS EUROPE

🌟 Celebrating Silvia's Remarkable Achievement! 🌟

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! 🏆

Silvia's impactful work at tAsociación Española Síndrome Antifosfolipídico - SAF Españaaña (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatology’s PARE patient committee showcases her unwavering commitment to advocacy.

Silvia's journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make ⤵️

www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/

Let's join together in celebrating Silvia's well-deserved recognition! 🎉
... See MoreSee Less

🌟 Celebrating Silvias Remarkable Achievement! 🌟

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! 🏆

Silvias impactful work at tAsociación Española Síndrome Antifosfolipídico - SAF Españaaña (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatology’s PARE patient committee showcases her unwavering commitment to advocacy.

Silvias journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make ⤵️ 

https://www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/ 

Lets join together in celebrating Silvias well-deserved recognition! 🎉
LUPUS EUROPE Uniting people with Lupus throughout Europe
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