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And lots of activity ties in well with “Kick Lupus” of course ๐Ÿ˜‰ For more information on Kick Lupus please read here.

There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted.

The World Lupus Federation, of which LUPUS EUROPE is a founding member, has released an e-report and a press releaseย entitledย “Inactivity, Isolation and Impact on Daily Life are Top Concerns for People Living with Lupus.”

Our LUPUS EUROPE Vice-chair, Anne Charlet, has also been interviewed by Neovacs in France. Neovacs has released a press release for World Lupus Day. Together they have also created a series of four videos on various topics. One of the videos features Anne’s wonderful daughter who was kind enough to share her experience as a young lupus patient. The video links are below.

Testimonial – A young person living with lupus

What is lupus?

The role of patient organisations

The importance of clinical trials

And of course, watch out for our awareness campaign, running all this month on Facebook and twitter. Feel free to share (many of our members have also translated the campaign into other languages).

 

 

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2 days ago

๐Ÿ‘จโ€โš•๏ธ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

๐Ÿ“ˆ The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

๐Ÿ” The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patientโ€™s condition is comprehensively evaluated.

๐ŸŽฅ Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
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๐Ÿ‘จโ€โš•๏ธ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

๐Ÿ“ˆ The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

๐Ÿ” The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patientโ€™s condition is comprehensively evaluated.

๐ŸŽฅ Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment
3 days ago

๐Ÿ˜จ Did you miss our #eular2024 debrief webinar?

๐Ÿ˜ฎโ€๐Ÿ’จ Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

EULAR Congress 2024 Debrief Webinar
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๐Ÿ˜จ Did you miss our #EULAR2024 debrief webinar?

๐Ÿ˜ฎโ€๐Ÿ’จ Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

https://www.facebook.com/LupusEurope/videos/815970850254193
1 week ago

๐ŸŒŸ Thank you to all who attended our #eular2024 debrief webinar!

๐Ÿ™Œ Especially to our presenters and PAN members who shared their invaluable insights and experiences.

Stay tuned for more news and updates and don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
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Svær sygdom ♥๏ธ๐Ÿ‘Š

1 week ago

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To try out LupusGPT, just go to: lupusgpt.org/ This is a multi-lingual tool, so do try it in your language and let us know what you think!

This is the webinar Jeanette Andersen, Lupus Europe Chair, mentioned in her feedback on "CAR T Cell Therapy in Lupus: Promises and Challenges Explored": www.youtube.com/watch?v=JMifTgQgvVs&t=3s

Thank you

LUPUS EUROPE Uniting people with Lupus throughout Europe
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