About being a trustee – Katharine’s story

Here is our second ‘Trustee story’, this time from Katharine.  When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations. I haven’t been able to work for a few years due […]

Meet the Lupus World at the ICL in Vienna

Today is World Lupus Day, a great time to be thinking about bringing the Lupus World together.  ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]

LUPUS EUROPE needs YOU!

If you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]

EUPATI Patients’ academy

Interview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]

World Lupus Day sees first French lupus-only conference!

The 10th and 11th of May 2015, the Immunopathology and Medicinal Chemistry laboratory of the CNRS and the University of Strasbourg, Faculty of Medicine will organize the first French conference dedicated exclusively to Lupus. Held in Strasbourg, France, the conference registration is free for patients, who just need to sign-up. The message from the organizers, professors Sylviane […]

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2 hours 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! 🎉