Patient Panel – “Senior with Lupus”

How does it feel when you have had lupus for more than 20 years ?

 

Lupus Europe is organising its 4th Patient Panel which will focus on the theme of « Senior with lupus ». If you are 60 Years + and have been diagnosed before 2000, send us an email and be selected to join another 10 persons from different countries in Europe that live in a similar situation. We very much would like to hear your opinion! What questions or concerns are biggest for you now? How is your lupus different now than it was at the start? What helps you kick lupus every day?

 

The Patient Panel is made for people with lupus by people with lupus. No outsiders, just among us. It will be held in Barcelona from Friday, February 3rd in the evening until Sunday, February 5th around lunch time. All costs (travel and stay) will be paid by LUPUS EUROPE. The language will be English, but don’t worry, most participants are not native speakers!

 

Please apply as soon as possible by email to secretariat@lupus-europe.org

 

Click on the language names below to view, download and share this announcement in YOUR national language:

Bulgarian , Croatian, Danish, Dutch, Estonian, Finnish, French, German, Greek, Hebrew, Hungarian, Icelandic, Italian, Lithuanian, Norwegian, Polish, Portuguese, Slovak, Slovenian, Spanish, Swedish

 

 

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Zoe Karakikla-Mitsakou

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    LUPUS EUROPE
    13 hours ago

    🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual 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 sexual well-being.

    🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, 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 sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

    ‼️Although sexual 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 #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being     ... See MoreSee Less

    🛑 Lupus is a compImage attachmentImage attachment
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    LUPUS EUROPE
    3 days ago

    📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!

    ➡️ “What is the added value of triple therapy in lupus nephritis” ⬅️

    🗓 11 March 2026
    ⏰ 4:00 p.m. CET (i.e., Paris time).

    🎙 Speaker: Dr Antonis Fanouriakis
    🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.

    Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.

    🔎 This webinar will explore:
    •⁠ ⁠The scientific rationale for triple therapy.
    •⁠ ⁠Current clinical evidence.
    •⁠ ⁠What this may mean for outcomes in lupus nephritis.

    Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!

    Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration     ... See MoreSee Less

    📣 Upcoming ERN RE
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    LUPUS EUROPE
    1 week ago

    🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

    ‼️ According to Lupus Europe's 2024 Swiss knife survey:

    1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
    2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
    3️⃣ Only a small minority of patients report long-term stability without flares.
    4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

    That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

    ✅ These updated recommendations reinforce several key messages that matter to patients:
    - Early and regular monitoring of kidney involvement.
    - Timely kidney biopsy when needed.
    - Clear treatment targets to preserve kidney function.
    - A strong focus on combination therapies when appropriate.
    - Long-term kidney protection, not only short-term control.

    🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

    You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

    And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989     ... See MoreSee Less

    🚨 New publication
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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