Convention registration reminder

Marienberg_wuerzburg

Has your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016.

The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are celebrating their 30th anniversary, a cause for great celebration!

We have a full programme of events as well as our council session and trustee nominations. Two trustee positions are up for election, so if you, or anyone in your national team, are interested in joining LUPUS EUROPE’s Board of trustees, please apply. Renewing trustees is essential to an organisation’s growth and efficiency. If you have considered becoming a trustee but are unsure of what it involves, don’t hesitate to get in touch with the secretariat or any of the trustees for more information. We can all be contacted at our email addresses which are made up of our first name followed by @lupus-europe.org (e.g. katharine@lupus-europe.org).

More information about the convention is and will be available in the member section of our website at this link. If you are having trouble logging in to your member area, please get in touch with the secretariat.

We look forward to seeing you in Würzburg!

 

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Alain Cornet

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    LUPUS EUROPE
    21 hours ago

    🇸🇪 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!     ... See MoreSee Less

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    LUPUS EUROPE
    3 days ago

    📢 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     ... See MoreSee Less

    📢 Calling all #lu
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    LUPUS EUROPE
    1 week ago

    📣 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/     ... See MoreSee Less

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    LUPUS EUROPE
    1 week ago

    🟣 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
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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