As announced in today’s Webinar, LUPUS EUROPE is offering new opportunities for people living with lupus to volunteer and support the cause. Specifically, we are looking for 6 new members for our Patient Advisory Network, and 6 more to create a new Lupus Communication Group.

PATIENT ADVISORY NETWORK (PAN)
The PAN is a network of people having lupus that structurally connects the patient community to the scientific community. There has been a sea change in research with stakeholders such as pharmaceuticals, healthcare professionals and academics embracing the value of the lived experience. People with lupus can offer a unique perspective to research bringing personal insights to enable the process to be more relevant, feasible and make outcome measures more meaningful.

Become a PAN member to really make a difference to the lives of people affected by lupus and play a vital role in research! Get involved in a whole range of research activities; be part of the design process,  help develop research questions, apply for funding and ethical approval, sit on an advisory group, carry out the research, help deliver more effective outcome measures, disseminate the research findings & more.
Being in PAN is

a great way to; learn new skills or develop existing skills, get work experience, build your confidence, feel motivated, gain a sense of achievement, contribute to a sector that matters to you, reap the rewards of improving the lives of others with lupus, make new friends and have fun

No previous experience is necessary, you just need a passion, good communication skills, good organisational skills, a willingness to learn, the ability to commit time with us.

We are looking for a wide cross section of applicants of approx. 6 new PAN members with different types of lupus whether it be young or old and any age in between, renal involvement, skin conditions, APS or other areas of involvement, different levels of severity and a good mix geographically of countries.

 

COMMUNICATION GROUP:
Lupus EUROPE’s 3rd Strategic objective is about having a voice and being proactive to bring about change. In order to achieve this, we want to step up our communication skills and effectiveness. Our ambition is to have a true Lupus Europe Comm’s group that brings continuity in support of LUPUS EUROPE’s communication. .
Hence, we are looking for 6-8 people with skills and experience in complementary facets of communication : communication strategy, graphics, WordPress,  writing, fact-checking, proof reading, press kit preparation and more who, who are  available to support LUPUS EUROPE throughout the year.
The selected team will meet face to face so that it can be fully equipped with Lupus Europe’s key relevant elements of LUPUS EUROPE; our mission, aims, objectives, goals, strategies, priorities, achievements and decision making process so we can improve communication using Newsflash, Blog, Website, social media platforms or other materials.
There will be opportunities for some of the Comm group  to join the convention for the purpose of blogging, tweeting, FaceBooking, writing, interviewing and more.

HOW TO APPLY:
For both groups, as well as for any other offer of volunteer services (like translations or anything else) please send us your information stating which network you are interested in, using this link http://eepurl.com/gbVrYz AND send an email to secretariat@lupus-europe.org. We will then come back to you on next steps.
Please note that the application deadline is very short : send your application by MARCH 15, so that we can promptly complete the selection process.

THE FIRST FACE TO FACE MEETING of  both networks will be held in Belgium May 18 -19, 2019. While we do not pay for volunteer work, we do cover all reasonable expenses such as travel and accommodation, and we are sure that you will find the work very rewarding !

For more details, please contact secretariat@lupus-europe.org

Looking forward to hearing from you!

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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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