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A UNIQUE OPPORTUNITY to meet people living with lupus from around Europe

LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities of daily treatment, its negative aspects, the way people cope with it, the influence remission and side effects have on adherence, as well as collaboration with doctors to improve treatment, and what could be done to accept and manage pills for life (technology, coping tactics, tips and tricks, …).

The profile requirements are: to have an official Lupus diagnosis, to NOT have attended the previous patient panel and not yet be heavily involved in a national patient organisation. The participants should have a good working knowledge of English, and be diverse in geographic origin, age and gender. Male or female, young or less so, newly diagnosed or ‘veteran’, moderate or severe lupus, if you are interested, you can apply! The final panelist selection will  be made by selecting  8 or 9 people from the applications received, using diversity as a key selection criterion.

As a prerequisite for attending the panel, volunteers will need to have a 45 minute skype (non directional) interview with Davide Mazzoni, LUPUS EUROPE Co-opt advisor for Research. This interview is NOT a test or selection interview, but will enable the collection of initial responses on a series of questions from the selected panelists. Those interviews, as well as the panel itself, will be recorded and transcribed, but, just like the full panel experience, will be anonymous.
The workshop itself will take place in Brussels mid-March 2016, and last from Friday evening to Sunday afternoon. Travel costs will be reimbursed, with accomodation/meals organised and paid for by Lupus Europe.  Participants need to commit to attend the entirety of the workshop (no partial attendance).

Applications should be sent to the secretariat (secretariat@lupus-europe.org) by December 22, 2015 latest. Candidates should send a short note in English applying for the panel expressing their interest  and add the following critical information : name, address, email, gender, age, type of lupus, current medication and ethnic origin. Answers should be expected before end December.

For any question, please contact Secretariat@lupus-europe.org

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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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