Groups directory

  • Group logo of PAN and VOLUNTEERS
    active 5 years, 3 months ago

    Thank you for Volunteering to support LUPUS EUROPE. It is thanks to Patient Engagement that we can deliver our mission. this group is a platform to interact with volunteers, letting you know what specific projects […]

    Private Group / 22 members
  • Group logo of Liverpool 2019 Presentations & Materials
    active 5 years, 3 months ago

    Dear Lupus Europe 2019 Convention participant,

    On this page, you will find all materials related to the Lupus Europe 2019 convention and council session.  It could be that some files are still missing if we […]

    Private Group / 35 members
  • Group logo of Kick Lupus
    active 6 years, 5 months ago

    The Kick lupus team is a project task force that will seek to launch cross border initiatives to ”kick lupus” further away. The initial focus of the campaign will be to energize people living with lupus to move, as […]

    Private Group / 4 members
  • Group logo of Message Tracks
    active 6 years, 6 months ago

    The Message tracks workgroup is a project team that will seek to design our priority messages for each of our target groups, as well as tghe supporting arguments. Those messages will then be put at disposal of our […]

    Private Group / 8 members
  • Group logo of Proposed sharing
    active 6 years, 10 months ago

    a place for people to post things they think we should share on social media etc. but where we can first check if it’s up to date, in line with our messages etc.

    Private Group / 1 member

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4 days ago

🦋 How much do you really know about lupus?

Stop wondering — find out now with SLAKE, the Systemic Lupus Assessment score for Essential Knowledge.

✔️ Quick and easy
✔️ Just a few minutes
✔️ Available in 20 languages
✔️ Get your personal lupus knowledge score

SLAKE is not a test — it’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more.

And if you want to keep learning, remember to visit #Lupus100 and #LupusGPT — two reliable resources to improve your lupus knowledge.

Don’t wait any longer.
👉 Click the link, choose your language, and take SLAKE today!

maladie-autoimmune.fr/SLAKE/
... See MoreSee Less

6 days ago

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! We're excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
... See MoreSee Less

🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.

🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉

💜 Welcome to the family! Were excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.
#HappyEaster
2 weeks ago

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients' priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!
... See MoreSee Less

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!Image attachmentImage attachment+3Image attachment