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.

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“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”

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🤩 May 10 is the #WorldLupusDay! And our Youth Group is commemorating it with a 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 focused on one of the most important and often overlooked topics for young people living with lupus: 𝐟𝐞𝐫𝐭𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐟𝐚𝐦𝐢𝐥𝐲 𝐩𝐥𝐚𝐧𝐧𝐢𝐧𝐠.

👩‍⚕️ How does lupus affect fertility?
💊 What should you consider before planning a pregnancy?
🧠 How can healthcare professionals better support young patients in these decisions?

This session brings together clinical expertise and real patient perspectives to provide clear, practical insights.

📅 𝐌𝐚𝐲 𝟏𝟎
⏰ 7 pm CET (i. e. Paris time)

🎙️ Speaker: Prof. Laura Andreoli
🗣️ Moderated by our Chair, Jeanette Andersen
👥 Organised with the Lupus Europe Youth Group

📌 Whether you are living with lupus, supporting someone who is, or working in healthcare, this webinar is for you.

👉 Don't wait any longer and register now! Send an email to secretariat@lupus-europe.org
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🤩 May 10 is the #

🌈 Beyond what you’ve experienced, something awaits.

🌟 A new way to approach your consultation is coming.

Make your consultation count.

💥 Stay tuned

#MakeItCount
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🆘 𝗦𝗸𝗶𝗻 𝗺𝗮𝘁𝘁𝗲𝗿𝘀 𝗶𝗻 𝗹𝘂𝗽𝘂𝘀.

🌍 The World Health Organisation has opened a public consultation on the draft Global Action Plan on Skin Diseases, a strategic framework that will guide governments in developing national plans on skin diseases.

🟣 Why is this important for the #lupus community?

👉 75–80% of people with SLE experience skin involvement. Skin lupus, including ACLE, SCLE and CDLE, has seen no new treatment options for over 80 years.

💬 This is an important opportunity to make sure that the voices of people living with lupus and the wider civil society community are heard.

📅 Deadline: 10 May- #WorldLupusDay
🔗 Add your voice and share with your community: www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-disea...
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🆘 𝗦𝗸𝗶�

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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