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The LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker.

Benefitting from the Italian Lupus Clinic experience, we also covered other topics such as the treatment of women who wish to have children, the use of biologics, how specialised lupus Clinics operate, … Among those presenting, and working in one such clinic, was Fulvia Ceccarelli, a rheumatologist who is herself a lupus patient. It was certainly interesting to hear from someone who has experienced both sides of the doctor/patient relationship. We also took a closer look at the non-biological side of pain, fatigue and stress, with an excellent presentation by the president of the Belgian French Speaking association, Bernadette Van Leeuw. Davide Mazzoni, one of LUPUS EUROPE’s patient research partners, presented a new study which is looking at the possible effects of childhood trauma and the pathways into adulthood which can affect a person’s disease onset and progress. He then took us through the 2017 survey “AT HOME OR IN HOSPITAL?” on the preference for subcutaneous injection or intravenous infusion of biological therapy among Italian SLE patients.

Our Kick Lupus campaign had a wonderful boost with Jeanette Andersen taking us through the new exercise programme (soon to be released). Jeanette has herself made an incredible recovery from being unable to walk last year to jumping and running around this year following her back surgery. The programme has several levels and can be started even if unable to get out of bed.

The convention was also the opportunity to discuss the 2018-2023 strategic plan with our members. The plan, developed after extensive consultation with multiple stakeholders provides us with a clear path for the years ahead, in the pursuit of our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.” The Strategic plan discussions were concluded by the adoption of the new LUPUS EUROPE logo. Our many thanks go to Patrick and Sandra from setfire.to, the pro-bono sponsors who designed the logo for us and are now finalising our new website. They have clearly understood what LUPUS EUROPE Stands for: while retaining the symbolic lupus butterfly, it has a vibrant person at its core – just as we have our members and their members at the very heart of our work. We very much wanted a symbol of energy and hope, reflecting the already significantly better outlook for lupus patients today and all our hopes for the future.

This year, Kirsten Lerstrøm, LUPUS EUROPE chair, is stepping down. We cannot thank her enough for 10 years of devoted service and dogged determination to serve the cause of people living with lupus. She has encouraged us to keep the momentum and we look to the future with hope and determination. At the close of the convention, Jeanette Andersen was elected as the new Chair of LUPUS EUROPE, and Alain Cornet was appointed to the newly created position of General Secretary.

We are happy to present the 2018 board who we are sure will continue to serve the best interests of LUPUS EUROPE’s member organisations. From left to right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Anne Charlet (Vice-Chair),  Jeanette Andersen (Chair), Annemarie Sluijmers (Skin) and Sara Badreh (Research & Youth).

board pic 2017

These few lines are just a taster, from a very full convention. More news and a complete convention report will be on its way soon.

 

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1 day 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 ➡️ ➡️ buff.ly/46nDCWT

🔴 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
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🔴 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://buff.ly/46nDCWT

🔴 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

7 CommentsComment on Facebook

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2 days ago
LUPUS EUROPE

🌺Thank you for your active participation & enthusiasm, which has made our webinar truly exceptional.

We hope that Dr. Bosch has provided valuable knowledge & shed some light on the incredible possibilities technology can bring to healthcare.

Stay tuned! More webinars to come soon!
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2 days ago
LUPUS EUROPE

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1 CommentComment on Facebook

If you have any questions or any points you would like to raise, please feel free to do so here! 😃

3 days ago
LUPUS EUROPE

Only one day left for the great day!

🌟 Don't miss our webinar on digital health & patient care! 🌟

⏲️ Time is running out to secure your spot at our transformative webinar.

💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.

Here's a glimpse of what awaits you:

✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
✅ Explore the boundless potential of technology in advancing healthcare.

🗓️ Date: September 28th (tomorrow!).
🕗 Time: 20:00 CET.

This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.

Join us and empower yourself with the knowledge that can transform lives! 📱🏥

The webinar will also be streamed live on Facebook. 🎥

Secure your spot now by registering:
📧 Email: secretariat@lupus-europe.org

If you have registered for Zoom already, please ensure you attend via Zoom 🤗.

See you at the webinar!
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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