We all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. LUPUS EUROPE was one of the active participants in the steering team of this project, funded by GSK. Today, on World Lupus Day,  the conclusions of this work are being released.

The Vision for Lupus report highlights three important Calls to Action to address these challenges:
Awareness: Raise awareness of lupus amongst the general public, people living with lupus, their families and healthcare providers to support early diagnosis, help people with lupus feel more acknowledged and better equipped to handle their condition;
Service Delivery: Improve access to specialist and multidisciplinary lupus clinics to ensure people with lupus are receiving the best quality care possible that addresses many aspects of this complex disease;
Clinical Research: Raise awareness of ongoing clinical trials to facilitate access to research participation and involve patients in the study design of lupus clinical trials, to ensure they address the aspects of the disease which matter most to patients.

We invite you to download and disseminate the   Vision for Lupus report and watch the short videos from steering team members  that highlight some of its important findings on www.visionforlupus.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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