WLF – World Lupus Day overview

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Here is an overview of the common World Lupus Day campaign compiled by the World Lupus Federation on the extent and spread of the joint World Lupus Day Campaign.

Duane Peters, who has been coordinating the WLF campaign, has told us that the response received has been excellent, especially the results of social media efforts.  News about the global lupus survey conducted by GSK was shared by many people through Facebook.  Here is a link that shows the feed of people posting about World Lupus Day AND the survey.

https://www.facebook.com/search/top/?q=%22world%20lupus%20day%22%20AND%20%22survey%22

The response on Twitter for World Lupus Day was also very good. The level of spontaneous response that has accompanied the postings of the WLF and its affiliated members is excellent.  Millions of impressions for lupus.

https://twitter.com/search?q=World%20Lupus%20Day&src=typd

WLF social media posts on Facebook generated 657,000 reactions and 81,000 engagements.  Posts that specifically referenced the survey data generated 398,000 reactions and 30,000 engagements.  Total reach through Twitter was 23-million, generating 5-million impressions.  There were a number of important Twitter and Facebook posts including Huffington Post, Mashable and Julian Lennon, along with many medical institutions, corporations, and other nonprofit and lupus patient groups.  #worldlupusday was very prominent on 5/10.

Pickup on the survey release by leading news outlets was great.  From all indications, it appears the media outreach was very successful.   Some big hits include Yahoo Finance and Reuters Online.  Combined they represent a potential audience of over 100-million website visitors.

There were great placements on Lupus News Day, Medical News Today, and RTT News:

http://www.medicaldaily.com/world-lupus-day-social-stigma-autoimmune-disease-385220

http://www.rttnews.com/slideshow/3404/living-with-lupus-hiv-aids-may-10-autoimmune-disease-world-lupus-day-non-contagious-disease-lupus-foundation-of-america-late-diagnosis-awareness.aspx

http://lupusnewstoday.com/2016/05/10/lupus-survey-story/

Traffic to the World Lupus Day website during the three-day per was great, with a 177% increase over the previous year.  Traffic to the lupus.org website also was up 71% for the period.  There were 10,700 views of the survey release on our lupus.org  website.  Total combined website visits during the period were 123,093.

There were 10,700 views of the survey news release on our lupus.org  website during the three days. This would be in addition to the views generated through the online news posting of the Marketwired distribution I had shared with you earlier today.

There were many events around the world in observance of World Lupus Day.  Many of these were shared on the World Lupus Federation Facebook news feed.   The WLF could only share a very small fraction of the World Lupus Day posts but this feed provides a very nice cross section of activities conducted on May 10.

https://www.facebook.com/worldlupusfederation

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Alain Cornet

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    LUPUS EUROPE
    2 days ago

    🦋 Our final #EULAR2026 recap is here!

    🌍 We started the day in the session “Next-Gen Treatments: CAR-based Therapies and Beyond in RMDs”, chaired by our Chair, Jeanette Andersen.

    The session explored new therapeutic frontiers, but also the responsibilities that come with them. For us, one message remains essential: innovation must be developed with patients, not only for patients.

    💬 Jeanette also delivered the PARE Meet the EULAR Expert session “AI as a Partner in Care: Empowering the RMD Community with Information”.

    The room was packed, showing the strong interest around #LupusGPT and #EasyLupus as powerful patient-led, validated digital tools that help people living with lupus access reliable, understandable information in almost any language.

    The many questions from attendees showed how relevant this topic has become for healthcare professionals, researchers, patient representatives and the wider rheumatology community.

    🧬 We also followed the “How to treat SLE” session with George Bertsias, who focused on current and evolving approaches in lupus care, including treat-to-target strategies, remission or low disease activity, and the importance of reducing long-term organ damage.

    🦴 Later, Edward Vital led the Meet the EULAR Expert session on “Management of joint involvement in systemic lupus”, a topic that matters deeply to many people living with lupus.

    💜 A special highlight of the day was seeing Lupus Europe’s work recognised during the EULAR highlights another year.

    These sessions take place at the very end of the Congress and bring together the key takeaways from #EULAR2026. Importantly, there are no parallel sessions at that time, which means there is no competition with other talks, and most of the attendees are in the room.

    🙏 Thank you to everyone who followed, shared, visited us, spoke with us and supported us throughout #EULAR2026.     ... See MoreSee Less

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    LUPUS EUROPE
    3 days ago

    🦋 We continue bringing you our #EULAR2026 congress recaps!

    The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.

    🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.

    Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.

    Yesterday, we already told you more about this poster and its key messages, in case you missed it!

    🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.

    📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.

    ♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.

    🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.

    That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/

    💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.

    🥳 And we celebrated Jeanette's birthday!

    😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260     ... See MoreSee Less

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    LUPUS EUROPE
    4 days ago

    😃 Last week at #EULAR2026, we presented POS0246-PARE, “Mapping mental health trajectories in lupus: patient-identified inflexion points and support opportunities from a European patient panel”.

    The poster was presented by Ricky Chotai, Lupus Europe Board Member, on behalf of Alain Cornet, Lupus Europe Finance Lead & Organisation Coach, and lead author of this work.

    ✅ This patient-led qualitative work explored how people living with lupus and established, currently stable mental health difficulties understand the trajectory of mental health across the lupus journey.

    ‼️ Based on our patient panel conducted in Portugal with 8 adults living with lupus, the work identified key moments when support may matter most: diagnostic uncertainty, early disease phases, fluctuating symptoms, and communication with healthcare professionals.

    🔴 One of the key messages is clear: mental health in lupus should not be seen only as an isolated symptom or crisis. It can be shaped over time by interactions with uncertainty, communication, and care structures.

    The findings point to practical opportunities for support, including earlier acknowledgement of mental health concerns at diagnosis, normalising mental health discussions in lupus care, clearer communication during periods of uncertainty, peer support, and integrated psychosocial support throughout the disease course.

    💫 Congratulations to Alain Cornet for this outstanding poster and to all authors: Zoe Karakikla-Mitsakou, Jeanette Andersen, Ricky Chotai, and Alain Cornet.

    Read the abstract:
    distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rls...     ... See MoreSee Less

    😃 Last week at #E
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    LUPUS EUROPE
    4 days ago

    💜 Thank you to everyone who attended our EULAR 2026 Recap Webinar and joined us to look back at one of our most exciting congresses in recent years.

    🤩 #Eular2026 has been intense, inspiring and full of moments we will remember.

    Over the Congress, Lupus Europe contributed to and followed an incredible amount of work:

    ✅ 7 presentations as speakers
    ✅ 3 sessions chaired
    ✅ 66 sessions attended
    ✅ 318 presentations followed
    ✅ All the interviews you have been able to see in this webinar

    But it is not only about numbers.

    🌟It is also about the people behind them: the commitment, the humour, the hugs, the shared tiredness, the late nights, the conversations between sessions, and the spirit of this amazing Lupus Europe family.

    What makes our work possible is not only the support we receive from our community, partners and friends.

    🥰 It is also the energy, attitude, and generosity of our volunteers, who give their time, expertise and heart to Lupus Europe.     ... See MoreSee Less

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