Dear Lupus Europe members,

The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”.

We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. He has been a freelance illustrator for 37 years. 

Here is what Leslie has to say about his involvement in this project:

“The two symbols associated with lupus, latin for wolf, are the wolf and the butterfly. Although the rash across many a lupus sufferer’s face is an unwanted symptom, its butterfly shape has become a symbol associated with the care of the disease.

The young woman in the poster is determined to control her lupus/wolf, with the support of a squadron of butterflies. The variety of butterflies indicate that symptoms and treatments differ from patient to patient.” 

With this campaign we hope to be able, not only to increase awareness, but also to promote better management of people’s lupus and a feeling of empowerment. The idea of taming the wolf is a strong message that it is possible to actively participate in our care and tame our disease.

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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! 🎉
LUPUS EUROPE Uniting people with Lupus throughout Europe
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