LUPUS EUROPE

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Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

13/10/2026

‼️ Webinar announcement – registration open! ‼️

✅ Good patient-physician communication can make a real difference in lupus care.

🦋 When communication works well, it can help people living with feel heard, support shared decision-making, and make it easier to discuss what matters most in daily life. But patients and healthcare professionals do not always experience those conversations in the same way.

😃 That is why we are really pleased to collaborate with The Lupus Academy on a two-part webinar series for both patients and healthcare professionals, exploring the patient–physician communication gap and the role of patient-reported outcomes in SLE.

👉 Webinar 1: The patient perspective

“The patient-physician communication gap and the importance of patient reported outcomes in SLE: The patient perspective”

🗣️ With Jeanette Andersen, Chair of Lupus Europe Board, Prof. Maria Dall’Era and Prof. Ronald van Vollenhoven

📅 15 October 2026
🕖 19:00–20:00 CEST
💻 Online
✅ Free to attend

The second webinar, on 19 November, will explore the same topic from the physician perspective.

You only need to register once to attend either or both webinars.

Register now: https://us06web.zoom.us/webinar/register/WN_pPQAXvBjSEqt0kyW5KCE7w #/registration

12/10/2026

🔴 is the swelling and tenderness of one or more joints.

It’s an illness that comprises many conditions that affect the joints, tissues around the joint, and other connective tissues: , rheumatoid arthritis and , to name a few.

🌍 is celebrated every year on 12th October to help raise awareness of the existence and impact of rheumatic and musculoskeletal diseases (RMDs).

‼️ Too many remain undiagnosed in the EU alone with an . Raising awareness is key to achieving early diagnoses for all people living with arthritis in Europe.

10/10/2026

🚨 Today is .

☝️ Do you know that patients are at high risk of anxiety and ?

‼️ Some of the main signs of depression are:

- Feelings of guilt, worthlessness, and helplessness.
- Pessimism and hopelessness.
- Insomnia, early-morning wakefulness, or sleeping too much.
- Crankiness or irritability.
- Restlessness.
- Loss of interest in things once pleasurable, including s*x.
- Overeating or appetite loss.

🙏 Always talk to your physician about how you feel. Addressing mental health problems promptly is important.

🦋 Do you want to know more? Visit and get reliable answers to all your questions about lupus in most European languages.

😵‍💫 For those overwhelmed by the medical jargon, try !

https://lupusgpt.org/

https://easy.lupusgpt.org/

29/09/2026

🔴 People with 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://ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs like .

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

28/09/2026

🇧🇪 Are you in Belgium? LUPUS EUROPE member Association Lupus erythémateux Belgique is inviting the lupus community to its Annual Association Day in Brussels on 10 October!

The day will bring people together for information, conversation and exchange, with:

🤰 A session on pregnancy and lupus with Dr Debiève, gynaecologist at Cliniques Universitaires Saint-Luc, followed by a personal testimony and Q&A.

📋 A session on patients’ rights with Mr Monin from LUSS, also followed by a Q&A.

🥗 There will also be a free lunch and time to connect with others.

📅 10 October 2026, from 10:00
📍 Maison des Associations Internationales, Rue Washington 40, 1050 Brussels

💜 The event is FREE to attend, but registration is required.

Find out more and register:
👉 https://www.lupus.be/event/journee-annuelle-de-l-association-2026-4/register

14/09/2026

🇷🇸 A new way of staying closer to our members: Lupus Europe on Tour!

✈️ Lupus Europe on Tour is another new initiative designed to bring us closer to member organisations. It is about listening first, better understanding the local context and finding even more practical ways in which Lupus Europe can support and strengthen national member groups.

💫 Last weekend, Ricky Chotai, Lupus Europe Board Member, travelled to Belgrade to visit our Serbian member organisation, Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS.

The visit was an opportunity to listen to local priorities, better understand where additional support may be useful and explore how we can make collaboration easier. Ricky met with the ORS team and members of the local clinical community, including Dr Mirjana Lapčević.

🦋 And this visit is not the last. More will follow!

If you are one of our member organisations and feel that closer support would be useful, please get in touch with us.

04/09/2026

🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s s*xual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate s*xual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling s*xual life, as the former can cause vaginal dryness and discomfort during in*******se, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on s*xual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although s*xual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this , we want to raise awareness about the importance of addressing s*xual health as a vital component of overall well-being

12/08/2026

Preparing for a specialist appointment? 🩺

LUPUS EUROPE have created FREE Lupus Consultation Cards to help people with lupus prepare for appointments.

Designed by people with and healthcare professionals, these cards help you:
✅ Identify the symptoms affecting you most
✅ Prioritise what you want to discuss
✅ Prepare your top questions in advance
✅ Support more focused conversations with your healthcare team

The cards can be completed digitally on your phone or printed out and taken with you to your appointment. They're available in multiple languages and in both female and male versions.

🔗 Download your free consultation card here: https://www.lupus-europe.org/lupus-consultation-cards/

05/08/2026

💊 Are you finding it difficult to follow your treatment?

💜 You're not alone.

Sometimes the problem isn't forgetting.

It might be that:
• the tablets are too large to swallow
• dry mouth makes them uncomfortable
• painful hands make blister packs difficult to open
• you're worried about possible side effects
• you're afraid of injections.

☀️ Or something else entirely. Perhaps you've been advised to avoid sun exposure, but your work requires you to spend long hours outdoors, making it difficult to follow that recommendation.

💊 Maybe getting your medication is not always easy because of distance, access, travel, daily routines or other practical reasons.

💫 Whatever the reason, your medical team can only help if they know about it.

💬 Remember that your health comes first. Tell your healthcare team about anything that makes your treatment difficult. They may be able to help you find a solution that works better for you.

In this interview recorded during , Prof. Nathalie Costedoat-Chalumeau explains why these conversations are so important.

🎥 Watch the video:
https://youtu.be/hNlDFIGck7E

▶️ Don't miss out and visit the Videos on demand section on our website for the full series:
https://www.lupus-europe.org/videos-on-demand/

Adresse

Rue D'Egmont 11
Brussels
1000

Site Web

http://lupus-europe.org/

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