CONFINED AT HOME ? Make the next few minutes useful by answering this short research on Patient Education!

LUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]

HELP US COLLECT VALUABLE DATA FROM PEOPLE LIVING WITH LUPUS

As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]

EULAR PARE 2019, the Highlights

The 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]

The World Lupus Federation seeks your quick input

The World Lupus Federation asks people with lupus to take a 12-question survey about the emotional effects of lupus and about clinical trials. We must recruit 500 people with lupus to take this brief survey. There are only 12 questions. All responses are confidential. The results will be published on World Lupus Day, May 10. Use […]

Apply to the EULAR PARE: Knowledge transfer programme

Every year, EULAR grants a set amount to its knowledge transfer programme. The programme is designed to support patient organisations that wish to further develop their skillset through applying lessons learned by other organisations in the EULAR network. This knowledge transfer is mainly done through visiting an organisation in another country. The programme is open […]

KICK LUPUS – SUMMER 2018 CONTEST

LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*) There are so many ways to Kick Lupus a little (or a lot) further away!     This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better […]

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 […]

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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