From the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee may seem daunting to some, so we have decided to tell our own ‘trustee stories’ to help you gain insight into the role of a trustee. Beginning with one of our newest trustees, Kirsi Myllys, our treasurer.

IMG_1895-2

“My first contact with the LUPUS EUROPE Trustees took place in Larnaca at the Convention held in Cyprus in 2012. There and then I made a promise to organise the 2014 convention in Helsinki. I knew this was a big promise to make, but it all happened and everything went well. The following year I had several skype calls with the Trustees and then in the summer of 2013, they invited me to a Trustees’ meeting in Amsterdam. That was a dream come true – truly.

In Amsterdam I felt I was one of them, one of the group. The team was so efficient, there was a lot to go through, all concerning lupus, and a couple of times I had to leave the room, when the Trustees discussed and decided on something that wasn’t meant to be heard by a non board member. In the end, I thought it seemed so great what LUPUS EUROPE is doing that I wanted to be more involved and do my bit. I have no illusions about it, I know it means hard work, but it’s all in the name of lupus.

Now that I’m one of the Trustees I get to do what I enjoy most, which is organising events and accounting (I finished my retraining in accounting in 2014). There is so much I need to learn, but one step at a time and in a while I will even be able to memorise the names of all the different organisations that Lupus Europe is involved with without any effort and notes. The best thing from my point of view is, however, that I know there is always someone there to help me out, if I feel I cannot do something. This feeling is new in my experience of voluntary work 😀

Kirsi”

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

🛑 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

📣 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

🚨 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
LUPUS EUROPE Uniting people with Lupus throughout Europe
Send