Tag: European Reference Networks

ERN survey on awareness and knowledge of clinical practice guidelines

An ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]

Live Twitter Feed

Lupus Europe Follow 7,248 4,316

Lupus Europe is the umbrella association of currently 32 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

15 May 2055195562660503714

✅ Thank you @autoimmunitymd for the invitation to talk about challenges in #Lupus. I have the feeling that there is now a significant momentum in #SLE
- NEW treaments on their way
- NEW recommendations for rare manifestations
- LUPUS-ALERT to screen for vulnerabilities etc

Reply on Twitter 2055195562660503714 Retweet on Twitter 2055195562660503714 10 Like on Twitter 2055195562660503714 32 Twitter 2055195562660503714

Lupus Europe @LupusEurope ·

14 May 2054925694312792466

😱 New kid on the block!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients & HCPs structure consultations & support more focused discussions.

🌍 Available in 18 languages!
📥 Download: https://www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount

Reply on Twitter 2054925694312792466 Retweet on Twitter 2054925694312792466 4 Like on Twitter 2054925694312792466 9 Twitter 2054925694312792466

Retweet on Twitter Lupus Europe Retweeted

ERN ReCONNET 🇪🇺 @ern_reconnet ·

13 May 2054472528395911445

TODAY’S @ERNReCONNET webinar at 16 CET on “CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient” with Prof. Georg Schett, moderated by Prof. Marta Mosca and the ePAG Jeanette Andersen.

✍️ Register here to participate: http://rb.gy/s18q03

Reply on Twitter 2054472528395911445 Retweet on Twitter 2054472528395911445 1 Like on Twitter 2054472528395911445 2 Twitter 2054472528395911445

Lupus Europe @LupusEurope ·

12 May 2054110343358488882

🟪 Consultations are short. Lupus is complex.

💫 A simple way to help patients prepare, prioritise, and support more focused discussions.

The Lupus Consultation Cards are now available in 18 languages.

🔗 Download them for free: https://www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount

Reply on Twitter 2054110343358488882 Retweet on Twitter 2054110343358488882 2 Like on Twitter 2054110343358488882 6 Twitter 2054110343358488882

Lupus Europe @LupusEurope ·

11 May 2053753402329542759

🦋 Upcoming @ern_reconnet webinar!

“CAR-T therapy in #SLE: explained to the patient”

😊 With Prof. Schett as guest speaker.

Moderated by Prof @MartaMartamosca & @Jeanette_Lupus, our Chair & ePAG representative of the ERN ReCONNET

🔗 Register now ⬇️

ERN ReCONNET 🇪🇺 @ern_reconnet

Register now for the 🆕@ern_reconnet #webinar “CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient” with Prof. Georg Schett, moderated by Prof. Marta Mosca and the ePAG Jeanette Andersen.

🗓️May 13th - 16 CET
✍️Registration is: http://rb.gy/s18q03

Reply on Twitter 2053753402329542759 Retweet on Twitter 2053753402329542759 1 Like on Twitter 2053753402329542759 1 Twitter 2053753402329542759

Retweet on Twitter Lupus Europe Retweeted

Amanda G @LAlupusLady ·

10 May 2053585686805217778

Celebrating @LupusEurope on #WorldLupusDay - find your #Lupus community and supporting #LupusAwareness around the world.

Reply on Twitter 2053585686805217778 Retweet on Twitter 2053585686805217778 3 Like on Twitter 2053585686805217778 5 Twitter 2053585686805217778

Lupus Europe @LupusEurope ·

10 May 2053558361455546370

❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.

However, there's something 🗝️that we also need to show.

🦋Lupus is an invisible illness with many faces. Let’s close #WorldLupusDay with our hopes,laughter & enthusiasm for life

Reply on Twitter 2053558361455546370 Retweet on Twitter 2053558361455546370 1 Like on Twitter 2053558361455546370 3 Twitter 2053558361455546370

Lupus Europe @LupusEurope ·

10 May 2053543232978538924

1/3 💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus this #WorldLupusDay.

❤️ A special thank you to Prof. @lauraandreoli80 for leading such an important discussion on reproductive health and lupus care.

#MakeItCount. Thread ⬇️

Reply on Twitter 2053543232978538924 Retweet on Twitter 2053543232978538924 1 Like on Twitter 2053543232978538924 4 Twitter 2053543232978538924

Live Facebook Feed

LUPUS EUROPE

3 days ago

😱 New tool for lupus!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients and healthcare professionals structure consultations, prioritise what matters to patients, and support more focused discussions.

Because lupus is complex, and consultation time is limited.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
📥 Download for free or fill it in online: www.lupus-europe.org/lupus-consultation-cards/

🟣 #makeitcount ... See MoreSee Less

Play

View on Facebook

View Comments likes 16 7 Comments: 0

0 CommentsComment on Facebook

LUPUS EUROPE

5 days ago

🟪 Consultations don’t always leave enough time to cover everything that matters.

😩 Symptoms, concerns, and questions can quickly become overwhelming when living with lupus.

🍀 The Lupus Consultation Cards are designed to help you come prepared, prioritise what matters, and make the most of your time with your doctor.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
🔗 Download them for free: www.lupus-europe.org/lupus-consultation-cards/

🟣 Make your consultation count.
#MakeItCount ... See MoreSee Less

Play

View on Facebook

View Comments likes 5 1 Comments: 0

0 CommentsComment on Facebook

LUPUS EUROPE

6 days ago

🦋 Upcoming ERN ReCONNET webinar!

“CAR-T therapy in Systemic Lupus Erythematosus (SLE): explained to the patient”

😊 The webinar will feature Prof. Georg Schett as guest speaker and will be moderated by Prof. Marta Mosca and Jeanette Andersen, Chair of Lupus Europe and ePAG representative of the ERN ReCONNET SLE disease group.

📅 Date: 13 May 2026
⏰ Time: 16:00 CEST
💻 Format: Online webinar

This session is designed to help make complex scientific information more understandable for people living with lupus, patient advocates, healthcare professionals and anyone interested in SLE.

🔗 Register here:
us06web.zoom.us/webinar/register/WN_SE65ZaxFT9isuoXi0O6o8w#/registration ... See MoreSee Less