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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4 days ago

🦋 How much do you really know about lupus?

Stop wondering — find out now with SLAKE, the Systemic Lupus Assessment score for Essential Knowledge.

✔️ Quick and easy
✔️ Just a few minutes
✔️ Available in 20 languages
✔️ Get your personal lupus knowledge score

SLAKE is not a test — it’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more.

And if you want to keep learning, remember to visit #Lupus100 and #LupusGPT — two reliable resources to improve your lupus knowledge.

Don’t wait any longer.
👉 Click the link, choose your language, and take SLAKE today!

maladie-autoimmune.fr/SLAKE/
... See MoreSee Less

6 days ago

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! We're excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
... See MoreSee Less

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! Were excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
#HappyEaster
2 weeks ago

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients' priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!
... See MoreSee Less

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!Image attachmentImage attachment+3Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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