Over the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand.

Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if not immediately, at least  within 3 days of ordering.

We now need to verify that our efforts are indeed resulting in an improved access, and remain qadequate the future. We therefore need your feedback: If you are a Patient using hydroxychloroquine, last time you purchased it, did you get your normal quantity when you asked in your pharmacy?

Please help us by filling this very short survey (available in several languages) https://www.surveylegend.com/s/25nh and send this link to all your lupus friends asking them to participate. then ,next time you buy Hydroxychloroquine, come back to this link and tell us again. It is only if many of you (not just those that have access issues) participate that we will be able to read relevant results, and focus the additional work where it possibly still is needed.

TAKE THE SURVEY HERE

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2 days ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 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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👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 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

😨 Did you miss our #eular2024 debrief webinar?

😮‍💨 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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😨 Did you miss our #EULAR2024 debrief webinar?

😮‍💨 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

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

🙌 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 ♥️👊

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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