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
    1 week ago
    LUPUS EUROPE

    During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients.

    Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study.

    Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients.

    The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’.

    Furthermore, we conducted a follow-up survey that showed the following:
    1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access.
    2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’.

    In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients' experience & state of mind as well as to objectify emerging signals of new shortages in Poland.

    This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern.

    How did hydroxychloroquine affect you?
    Did you feel anxiety during that period?
    Did your physician warn you about the shortage and advised you on what to do?

    lupus.bmj.com/content/10/1/e000895     ... See MoreSee Less

    During the early phases of the pandemic in 2020, hydroxychloroquine was largely used for #COVID19; this affected #lupus patients. Shortages of medicine create #anxiety that can be long-lasting. Even when supply is re-established, the fear remains, according to our last study. Hydroxychloroquine (HCQ) is the cornerstone in #SLE management. Therefore, the shortage due to the covid-19 pandemic deeply affected patients. That is why, in the middle of the shortage, we conducted a survey to quantify this access gap and the anxiety it caused in SLE patients. The analysis of the answers given by 2,422 SLE patients showed that 48.3% of them could not obtain HCQ in their usual pharmacy, and an average level of 6.45 on a Likert scale of 0 - 10 was registered on the question ‘How anxious are you about not being able to have access to HCQ?’. Furthermore, we conducted a follow-up survey that showed the following: 1️⃣ Only 13.5% of respondents had access issues, which confirmed restored access. 2️⃣ Anxiety significantly reduced to an average of 4.15 out of 10, being 10 ‘extreme anxiety’. In November 2021, 18 months after supply was restored, a third follow-up survey was conducted to re-evaluate patients experience & state of mind as well as to objectify emerging signals of new shortages in Poland. This study highlights that establishing an effective communication system is necessary to reassure patients when short-term shortages are taking place and is key to avoiding fast-spreading anxiety relating to this concern. How did hydroxychloroquine affect you? Did you feel anxiety during that period? Did your physician warn you about the shortage and advised you on what to do? https://lupus.bmj.com/content/10/1/e000895Image attachmentImage attachment+3Image attachment
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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023!

    The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology.

    The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”.

    Learn more about this competition:

    www.eular.org/pare-stene-prize📣 Meet the 2023 #EULAR Edgar Stene Prize Jury!

    🏆 The call for essay submissions have now closed and winners will be announced on 15 March!

    Learn more about the #EULARStenePrize here 👉 pulse.ly/wforpnid8f

    Register to #EULAR2023 👉 pulse.ly/r1xt9zca9p     ... See MoreSee Less

    Our Chair, Jeanette Andersen, is the jury leader for the #EULARStenePrize 2023! The Stene Prize competition is coordinated by PARE and the prize will be awarded at the Opening Plenary Session of the EULAR European Congress of Rheumatology. The theme this year is “How better communication with my doctor improved my life with a rheumatic and musculoskeletal disease (RMD)”. Learn more about this competition: https://www.eular.org/pare-stene-prize
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    What is RMD?

    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Sara, our Patient Advisory Network (PAN) coordinator, invites you to take part in our #kicklupus competition.

    Remember that you can participate by sending your testimonial in your own language to zoe@lupus-europe.org.

    Let's tell the world how volunteering for a #lupus organisation has helped change our life!

    This competition is open only to people living in Europe with a diagnosis of lupus who are volunteers in a European Lupus organisation.     ... See MoreSee Less

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    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    Oh wow 🤩!

    Due to unforeseen circumstances, we have 2 spots left for our Senior Panel!

    If you live in Europe and have been diagnosed with #lupus before 2000, don't think twice and come to Barcelona with us!

    The deadline for applications is this Friday!

    Watch the video to make sure you fulfil the requirements and get to know more about this exciting opportunity!     ... See MoreSee Less

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    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send