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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7 days ago
LUPUS EUROPE

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
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Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
 
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

Recording your appointment helps

Medication side effects short and long twem

1 week ago
LUPUS EUROPE

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.

ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
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1 week ago
LUPUS EUROPE

Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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