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 10 to 15 trained and energized 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 (

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5 days ago

As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.

We would greatly appreciate if you followed this rule when posting on the page.
Thank you
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1 week ago

#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer
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Wauvvvv SO good looking :-)