Use your free time to take survey from Lupus Europe

Click here to subscribe

Lupus Europe – Survey Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

5 YES/NO questions on Clinical trials

A very short “YES or NO” questionnaire on clinical trials to focus next steps

Hydroxychloroquine Availability

Did you find HydroxyChloroquine last time you tried to buy it?

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Rheumatology Patient Survey

Help scientists raise awareness of the areas most important to you, where more support may be needed by taking part in the survey

OMERACT-Adherence Project

Help scientists understand the experiences of patients with RMDs (inc. lupus) around medication adherence

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Photolup Study

Help scientists understand photosensitivity in lupus better by taking part in the survey

ERN ReCONNET Survey

Tell scientists about the unmet needs of rare disease patients (inc. lupus) around pregnancy

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Photolup Study

Help scientists understand photosensitivity in lupus better by taking part in the survey

ERN ReCONNET Survey

Tell scientists about the unmet needs of rare disease patients (inc. lupus) around pregnancy

Lupus Europe STRATEGIES

LUPUS EUROPE • Intro
LUPUS EUROPE • Intro
Feb 21, 2019
LUPUS EUROPE • Research
LUPUS EUROPE • Research
Feb 21, 2019
LUPUS EUROPE • Members
LUPUS EUROPE • Members
Feb 21, 2019
LUPUS EUROPE • Heard
LUPUS EUROPE • Heard
Feb 21, 2019

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
LUPUS EUROPE
5 hours ago
LUPUS EUROPE

✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/

🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus ... See MoreSee Less

✅ Yes! As many of you guessed, the October theme of the #KickLupus campaign is... vaccines! 💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus. 🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems. Join us in the #KickLupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively. Together, we can make a difference! 💜 💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️ https://lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus Remember you can also check on #LupusGPT in your preferred language! https://lupusgpt.org/ 🇩🇰 https://lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇩🇪 https://lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇪🇸 https://lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇬🇷 https://lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇫🇷 https://www.rhumatismes.net/index.php?id_q=863 🇮🇹 https://lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇳🇱 https://lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇷🇴 https://lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇫🇮 https://lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇺🇦 https://lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus 🇷🇺 https://lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupusImage attachmentImage attachment+7Image attachment
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • likes love 2
  • Shares: 0
  • Comments: 1

1 CommentComment on Facebook

Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus

LUPUS EUROPE
4 days ago
LUPUS EUROPE

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr ... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast! 🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations. 🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe. 📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better. 🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care. https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • likes 14
  • Shares: 1
  • Comments: 0

0 CommentsComment on Facebook

LUPUS EUROPE
6 days ago
LUPUS EUROPE

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health! ... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge! 🤔Can you guess our October theme based on this sneak peek image? 👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • likes 17
  • Shares: 1
  • Comments: 3

3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE
1 week ago
LUPUS EUROPE

🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay ... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people. 👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768 🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus. 1️⃣ Always talk to your physician about preventive measures. 2️⃣ Work to minimise risk factors ⤵️ - Dont smoke🚭 - Practise exercise🏃‍♂️ - Have a healthy diet🍏 #WorldHeartDayImage attachment
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • likes love 20
  • Shares: 3
  • Comments: 1

1 CommentComment on Facebook

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.