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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

Live Facebook Feed

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Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours
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#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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