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
    16 hours ago
    LUPUS EUROPE

    🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam!

    The day was packed with insightful talks and lively discussions on #lupus research and management.

    🦋 Some of the key highlights included:

    ✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson.
    ✨ Lupus and cancer by Dr Sasha Bernatsky.
    ✨ Lupus and infections led by Dr Bregtje Lemkes.
    ✨ Lupus and vaccinations by Dr Reşit Yıldırım.

    🗣️ Plus, enriching panel discussions on these crucial topics!

    💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen.

    🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE.

    🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven.

    🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 .

    🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today!

    𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates!

    📲💻 twitter.com/LupusEurope

    #LupusAcademy2024     ... See MoreSee Less

    🎉 What an amazing first day we had at the 𝐋𝐮𝐩𝐮𝐬 𝐀𝐜𝐚𝐝𝐞𝐦𝐲 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 in Amsterdam! The day was packed with insightful talks and lively discussions on #lupus research and management. 🦋 Some of the key highlights included: ✨ Lupus and hemophagocytic lymphohistiocytosis with Dr Jessica Manson. ✨ Lupus and cancer by Dr Sasha Bernatsky. ✨ Lupus and infections led by Dr Bregtje Lemkes. ✨ Lupus and vaccinations by Dr Reşit Yıldırım. 🗣️ Plus, enriching panel discussions on these crucial topics! 💸 We also explored the management of lupus in low-middle-income countries with Dr Sandra Navarra. We had a chance to engage with poster presentations and a lively debate on DOACs in #APS and SLE/APS featuring Prof Ricard Cervera and Dr Hannah Cohen. 🌙 The day concluded with a plenary session on lupus basic science, where Dr Leonid Padyukov discussed lupus genetics 🧬, Dr Claudia Mauri explored the regulation of B and T cell interactions, and Dr Thomas Dörner questioned the role of type I interferon in inflammatory rheumatic diseases like #SLE. 🎶 After such a full day, we ended on a high note with a wonderful evening entertainment featuring a brilliant performance by Prof David Isenberg and the Davidettes and an incredible piano interpretation of Beethoven by Prof Ronald von Vollenhoven. 🥰 Additionally, Professor Anisur Rahman recited a poem where he mentioned many of his colleagues in a flattering way, adding a touch of humour and camaraderie to the night 🙌 . 🤩 Don’t miss our Chair, Jeanette Andersen, and Dalila’s interventions today! 𝐖𝐞 𝐚𝐫𝐞 𝐥𝐢𝐯𝐞-𝐭𝐰𝐞𝐞𝐭𝐢𝐧𝐠 the event‼️ So be sure to 𝐟𝐨𝐥𝐥𝐨𝐰 𝐮𝐬 𝐨𝐧 𝐓𝐰𝐢𝐭𝐭𝐞𝐫 for real-time updates! 📲💻 https://twitter.com/LupusEurope #LupusAcademy2024Image attachmentImage attachment+7Image attachment
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    I’ve been through a similar journey and understand your concern. Natural alternative remedies by Dr osewen solution home is a game changers. I was struggling with Psoriasis,thyroid , Fibromyalgia and chronic pains for 3 years. Have you tried reaching out to any support group or organization for help.I wholeheartedly recommend reaching out to him through his Facebook webpages : www.facebook.com/103770562521545 Your path to recovery may be closer than you think. Sending love 💕 xx

    LUPUS EUROPE
    2 days ago
    LUPUS EUROPE

    Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven.

    📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the "Living With Lupus in 2024" survey results.

    🌟 Continuous education and skill development are essential to fulfil our mission 💪.

    ❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe.

    🗣️ Our sincere thanks also go to all the patients who participated in our "Living With Lupus in 2024" survey.

    🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients' needs.

    ✅ Let's keep getting involved in research! The more patients respond, the more significant and impactful the data will be.     ... See MoreSee Less

    Last weekend, Lupus Europe Volunteers participated in an intensive abstract workshop in Leuven. 📊 The workshop combined theoretical sessions that included statistics with practical exercises! We worked to develop abstracts based on the Living With Lupus in 2024 survey results. 🌟 Continuous education and skill development are essential to fulfil our mission 💪. ❤️ We are grateful for the commitment and enthusiasm of our volunteers, who are truly inspiring, working with us to make a meaningful impact on the lives of those living with lupus across Europe. 🗣️ Our sincere thanks also go to all the patients who participated in our Living With Lupus in 2024 survey. 🙏 A huge thank you to the valuable input and excellent work of all workshop attendees! We have already drafted a number of abstracts that we could submit to be presented at medical conferences, helping raise awareness of patients needs. ✅ Lets keep getting involved in research! The more patients respond, the more significant and impactful the data will be.Image attachmentImage attachment+6Image attachment
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    Congratulations to all of you in Lupus Europe for all the great work you do! 💪👏☝️👌

    LUPUS EUROPE
    3 days ago
    LUPUS EUROPE

    🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

    💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

    🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

    💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

    ‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

    🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being     ... See MoreSee Less

    🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life. 💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being. 🚨In addition to lupus, overlapping conditions such as Sjögren’s syndrome and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy. 💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido). ‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care. 🔊 And that is why, on this #WorldSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-beingImage attachment
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    LUPUS EUROPE
    4 days ago
    LUPUS EUROPE

    🚨𝐂𝐚𝐥𝐥𝐢𝐧𝐠 𝐚𝐥𝐥 𝐭𝐡𝐨𝐬𝐞 𝐥𝐢𝐯𝐢𝐧𝐠 𝐰𝐢𝐭𝐡 𝐥𝐮𝐩𝐮𝐬🚨

    🔸 Patients
    🔸 Family and friends
    🔸 Health professionals

    #lupus is a chronic, heterogeneous and unpredictable disease.

    ✅ However, there are many treatment options and non-pharmacological interventions that can help keep lupus under control.

    😃 Starting this month, we will be sharing 12 of the latter, and we are going to show you how we do it.

    Join us in this #kicklupus challenge!

    Let's motivate each other and get better together! 💪     ... See MoreSee Less

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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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