LUPUS EUROPE Survey Center

There is still so much to learn about lupus in Europe. One of the ways this is happening is through surveys. Some are organised by LUPUS EUROPE, others by the European reference Networks or our partners, others by academics or other member groups… To help you contribute, we have assembled here some of the surveys currently available. Don’t hesitate to click on the respective links to provide your input to all!

Hydroxychloroquine Availability

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

5 YES/NO questions on Clinical trials

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

Rare Barometer

Help EURORDIS communicate facts and figures to decision makers on the future of rare diseases (incl. lupus), so that your voice is heard

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

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LUPUS EUROPE
15 hours ago
LUPUS EUROPE

Did you miss our joint webinar with ERN RECONNET?

Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced.

Watch it and tell us what you think about them!

Did you know that our Chair, Jeanette Andersen was part of the task force?
😃

EULAR 2023 Debrief – for people living with lupus LIVE LINK ... See MoreSee Less

Did you miss our joint webinar with ERN RECONNET? Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced. Watch it and tell us what you think about them! Did you know that our Chair, Jeanette Andersen was part of the task force? 😃 https://www.facebook.com/LupusEurope/videos/1464013921069862
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Thkx

LUPUS EUROPE
16 hours ago
LUPUS EUROPE

Today is #WORLDAPSDAY, an autoimmune disease that affects 20-30% of people with #lupus.

#APS can cause:

- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.

#pregnancy #planning #SLE #awareness #APSAwareness ... See MoreSee Less

Today is #WorldAPSDay, an autoimmune disease that affects 20-30% of people with #lupus. #APS can cause: - Excessive blood clotting. - Certain pregnancy complications. Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS. #pregnancy #planning #SLE #awareness #apsawareness
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LUPUS EUROPE
2 days ago
LUPUS EUROPE

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!

We also...

🙌 Had 2️⃣ oral presentations.
🙌 3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.

Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan!

youtu.be/lLNJmCJ7iqk ... See MoreSee Less

Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted! We also... 🙌 Had 2️⃣ oral presentations. 🙌 3️⃣ posters. 🙌 Alain Cornet was one of the abstract award winners. 🙌 Zoe presented in the scientific abstract plenary session. Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan! https://youtu.be/lLNJmCJ7iqk
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LUPUS EUROPE was live.
3 days ago
LUPUS EUROPE

... See MoreSee Less

PlayEULAR 2023 Debrief – for people living with lupus LIVE LINK
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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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