The Board invites you to a Webinar on February 17

We would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]

EULAR CONGRESS

20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]

INTEGRATE – A report from the Pisa Workshop

“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]

Only 2 days left to complete INTEGRATE and ERN surveys – Help us get the needed extra feedback

in only 2 days, the INTEGRATE and  ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]

Kick Lupus word cloud competition winner!

The LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]

LEUVEN 2018

In 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]

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 […]

It’s World Lupus Day!

We at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]

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2 weeks ago
LUPUS EUROPE

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #kicklupus with prevention?
... See MoreSee Less

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

🗣️ Your Voice Matters!

We want to hear from YOU!

❓ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! 💎

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

✍️ You can answer in English or in your own language.

Ready to share your thoughts?

🔗 Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

🤗 Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! 💪
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1 CommentComment on Facebook

🤷‍♂️

4 weeks ago
LUPUS EUROPE

📆 New month, new challenge!

🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

🤔 Can you guess what this month's theme is all about?

💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? 💪
... See MoreSee Less

📆  New month, new challenge!

🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 

🤔 Can you guess what this months theme is all about?

💡 Hint: Its all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

💪🏻🍀

1 month ago
LUPUS EUROPE

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment