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)

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2 days ago

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.

🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.

🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this day with our hopes, our laughter, and our enthusiasm for life.

🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has.
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2 days ago

‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLEs most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#WorldLupusDay
#Lupus100
2 days ago

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! lupusgpt.org/

#WorldLupusDay
#Lupus100
... See MoreSee Less

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: https://lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

https://lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! https://lupusgpt.org/

#WorldLupusDay
#Lupus100
2 days ago

🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #lupusgpt and find out!

Getting to know the disease is key for an early diagnosis.

lupus100.org/en/questions/what-are-the-first-signs-of-lupus

lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible
... See MoreSee Less

🚨 #Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #LupusGPT and find out!

Getting to know the disease is key for an early diagnosis.

https://lupus100.org/en/questions/what-are-the-first-signs-of-lupus

https://lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible