LUPUS EUROPE – PATIENTS ADVISORY NETWORK

People with lupus need new and better treatments to improve their long-term prognoses and their quality of life. We need a better understanding of the disease and its medical, social and psychological impact, so that effective plans can be put in place. LUPUS EUROPE strongly believes that such research can only take place with the active participation of people with lupus, and of patient organisations.

To understand how we can best progress, LUPUS EUROPE organised a workshop session with Doctors and Scientists engaged in research, with other patient groups and non-profit organisations actively engaged in this area; and with representatives of the pharmaceutical industry engaged in Lupus related research. In addition, it gathered input from its members through a survey. These various initiatives have converged to the conclusion that to achieve the most meaningful results, LUPUS EUROPE should establish a “Patient Advisory” Group as defined below.

The Mission

The Patient Advisory Network (PAN) is a team of 20 to 25 trained and energised experienced patients, living with lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus, including EULAR task forces, SLEuro initiatives and ERN Research. They structurally connect the patient community to the scientific community. They provide prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plans.

 

If you are interested in working as part of  LUPUS EUROPE PATIENT ADVISORY NETWORK, or have projects that would benefit from our support, contact LUPUS EUROPE’s secretariat (secretariat@lupus-europe.org)

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
2 weeks ago
LUPUS EUROPE

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!
... See MoreSee Less

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists! 

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!Image attachment
3 weeks ago
LUPUS EUROPE

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon!
... See MoreSee Less

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us: 
How has volunteering for a #lupus organisation helped change your life? 
Amazing prize to be announced soon!
3 weeks ago
LUPUS EUROPE

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022
... See MoreSee Less

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter? 
Read all about it by going to
https://mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022

Comment on Facebook

Защо не се превеждат статийте за лупус

3 weeks ago
LUPUS EUROPE

"Effective doctor-patient communication is crucial in building a successful therapeutic doctor-patient relationship". This will bring benefits for both doctors & patients and will have an impact on the clinical outcomes.

Learn more about patient-doctor relationship from Prof. Chiara Tani by watching this video and tell us:
How is your relationship with your doctor?
Do you think it helps with adherence and other aspects of your disease?

youtu.be/JUhIx2fjJ_c
... See MoreSee Less

Effective doctor-patient communication is crucial in building a successful therapeutic doctor-patient relationship. This will bring benefits for both doctors & patients and will have an impact on the clinical outcomes. 

Learn more about patient-doctor relationship from Prof. Chiara Tani by watching this video and tell us: 
How is your relationship with your doctor? 
Do you think it helps with adherence and other aspects of your disease?

https://youtu.be/JUhIx2fjJ_c

Comment on Facebook

Moi personnellement pour l'instant c'est galere

Crucial❣️