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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🇸🇪 Spotlight on Lupus Sweden!

💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📢 Calling all #lu

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: lupusgpt.org/
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🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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