Being a Lupus100 Translation Volunteer

Sandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]

ERN ReCONNET questionnaire

LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]

Eular 2018

Today is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]

LUPUS EUROPE needs YOU!

If you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]

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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