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 โ€œPatient Advisoryโ€ 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 ofย  LUPUS EUROPE PATIENT ADVISORY NETWORK, or have projects that would benefit from our support, contact LUPUS EUROPE’s secretariat (secretariat@lupus-europe.org)

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5 days ago
LUPUS EUROPE

Litifilimab, a monoclonal human antibody, has significantly reduced skin disease activity in people with cutaneous lupus erythematosus (CLE) compared to placebo. The phase 2 results have just been published in the The New England Journal of Medicine, which you can find in the "Info Centre" section of our website!

Don't forget to subscribe to be up to date!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
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Litifilimab, a monoclonal human antibody, has significantly reduced skin disease activity in people with cutaneous lupus erythematosus (CLE) compared to placebo. The phase 2 results have just been published in the The New England Journal of Medicine, which you can find in the Info Centre section of our website! 

Dont forget to subscribe to be up to date!

https://www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
7 days ago
LUPUS EUROPE

No matter what chronic illness you're living with, having a sense of community and knowing
that you're not alone is helps your daily health and is key to staying motivated.

Follow the community over at @ThisIsLivingToday for tips and advice on wellness, mindfulness and movement. Letโ€™s fight the daily battle together.
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1 week ago
LUPUS EUROPE

We have partnered with @ThisIsLivingToday, a community of people living with chronic conditions with the aim of sharing tips, advice and inspirational stories that help improve health. ๐Ÿงก

Follow their page @ThisIsLivingToday and hear from individuals who are facing the same challenges you may be facing. Letโ€™s work together and lift each other up.
... See MoreSee Less

We have partnered with @ThisIsLivingToday, a community of people living with chronic conditions with the aim of sharing tips, advice and inspirational stories that help improve health. ๐Ÿงก

Follow their page @ThisIsLivingToday and hear from individuals who are facing the same challenges you may be facing. Letโ€™s work together and lift each other up.
2 weeks ago
LUPUS EUROPE

Good news!!! Belimumab, a monoclonal antibody, has been approved by the FDA for the treatment of pediatric patients with active lupus nephritis on standard therapy.

Belimumab is the first treatment specifically approved for lupus in more than 50 years.

You can read more about it, plus the results of the phase II, in the link from MedPage Today ๐Ÿ‘‡

www.medpagetoday.com/rheumatology/lupus/99927
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Yes!!!!!!

nu hopen dat Nederland artsen dit overneemt๐Ÿค”

So happy to hear this

Brilliant

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