You will remember from our previous mails that this year’s WLD is done as a true World Campaign, as a first tangible result from the World Lupus Federation that we have kicked off in our 2015 Convention at ICL. There are nearly 200 lupus organizations around the world. Let’s make the 2016 observance of World Lupus Day the best ever.
Social Media Posts – Graphics and Suggested Text
At the end of this email you will find suggested language for social media posts to Facebook and Twitter. We also provide a link where you can download graphic images to use with your social media posts. Download the layered Photoshop file (which ends in the letters .psd) if you wish to edit the text or translate the graphics into a different language. We also share social media graphics that were developed by GlaxoSmithKline which conducted the survey and shared the data with the World Lupus Federation for World Lupus Day. You also can download a MS Word file with the suggested text by clicking on the link below. https://ws.onehub.com/folders/herkxv7j
World Lupus Day Media Release
At the end of this email we provide suggested text for a media release about World Lupus Day. The release includes information about the World Lupus Federation and data from the global lupus awareness survey. Please share this release with your news media and also post it to your Facebook page and website. PLEASE DO NOT PUBLISH THE MEDIA RELEASE ONLINE UNTIL MONDAY MAY 9. Below is a link where you can download a MS Word file of the release text. You may edit the release to include local information about your observance of World Lupus Day or translate the release into a different language. https://ws.onehub.com/folders/ljeyhaf4
Global Survey on Lupus Awareness
GSK shared slides that show results from one of the largest surveys ever conducted to measure global awareness and attitudes about lupus. You can view the data by clicking on the link below. We provide summary data (combined data from all 16 countries included in the survey) and data broken out for each individual country. We regret more countries could not be included in the survey this year. Below is the link where you can download information about the survey. https://ws.onehub.com/folders/1rbxbew1
As mentioned above, we also created graphics and suggested text you can use to share the survey data on social media, such as Facebook and Twitter. You can download the graphic and text files using the link provided below. https://ws.onehub.com/folders/herkxv7j
More Resources Available Online
Use the link below to download materials and other resources to help promote awareness of lupus. We provide a flyer, symptoms check list, World Lupus Day proclamation, logos, media releases, social media graphics and other resources. Use the link below to access the full list of materials available for your use. You are welcome to download and edit the files to include local information or translate the materials into a different language. Additional resources will be posted on Monday. Details will be provided at that time. In the meantime, please use the resources now available by clicking on the link below. https://ws.onehub.com/folders/ow3uz5ub
Send Us Pictures of Your World Lupus Day Activities
Take pictures of your activities and share them with us. Also share copies of proclamations that were issued as part of World Lupus Day. Send your images to firstname.lastname@example.org. Be sure to provide information about the activity shown in the photograph. We will include these pictures in a video that will show all of the activities associated with this year’s observance of World Lupus Day.
Link to World Lupus Day Website
Add links to worldlupusday.org on your organization’s website, Facebook and Twitter posts, and in emails and newsletters. Help generate visits to the World Lupus Day website so we can spread awareness about lupus.
Thank You for Your Support of World Lupus Day 2016
Suggested Text for Social Media Posts to Facebook and Twitter Facebook & Twitter Scheduled Posting Schedule and Draft Messages Friday (May 6) – Teaser about upcoming World Lupus Day
(Facebook) Tuesday, May 10 is World Lupus Day. 200 lupus groups worldwide will spread awareness of lupus and its impact. Data to be released from one of the largest global surveys ever conducted to measure public awareness and attitudes about lupus, plus exciting news about a new global alliance to elevate lupus on the world’s health agenda. Visit worldlupusday.org to learn more.
(Twitter) On #WorldLupusDay we’ll be sharing findings of a new international survey on lupus awareness & attitudes. More at: WorldLupusDay.org
Monday (May 9) – Tomorrow is World Lupus day
(Facebook) World Lupus Day is Tuesday. Introducing the World Lupus Federation, a coalition of 200 lupus patient advocacy groups who are working to elevate understanding of lupus. Newly released survey data on lupus awareness and attitudes shows the urgent need to educate the public about the lupus and its impact. One-third of adults don’t know lupus is a disease and half don’t know that lupus can cause serious health complications. Learn more at worldlupusday.org.
(Twitter) Tomorrow on #WorldLupusDay we’ll have an exciting announcement with an international flair. Stay tuned! WorldLupusDay.org
Tuesday (May 10) – Today is World Lupus Day
(Facebook) Today is World Lupus Day. Lupus has no boundaries. It strikes people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body, in any way, at any time, often with unpredictable and life-changing results. Data from a 16-nation awareness survey shows a profound lack of understanding and misconceptions about lupus. Learn how the World Lupus Federation is raising awareness. Wordlupusday.org.
(Twitter) ) Lupus knows no boundaries. This #WorldLupusDay get informed about lupus awareness and attitudes worldwide at WorldLupusDay.org!
Wednesday – Keep Raising Awareness of Lupus
(Facebook) Everyday must be World Lupus Day. Sign the petition to urge the World Health Organization to elevate lupus on the global health agenda. The World Lupus Federation is working to raise awareness and understanding of lupus. Data from a 16-nation survey shows more work is needed to build support for the more than five million people worldwide who are living with lupus. Worldlupusday.org.
(Twitter) World Lupus Day is only the beginning. Keep raising awareness of lupus. Get the facts from the @WorldLupusFed at WorldLupusDay.org.
New Global Survey Reveals Most People Have Serious Misconceptions about Lupus World Lupus Federation launches to elevate lupus as a serious health concern that deserves increased support
On Tuesday, May 10, the newly-launched World Lupus Federation – a coalition of global lupus patient groups – announces results of one of the largest global surveys ever conducted looking at awareness and attitudes about lupus among the general public in 16 countries.
“Public awareness of lupus around the world is low and a range of misconceptions persist about the autoimmune disease,” said Sandra C. Raymond, President & CEO of the Lupus Foundation of America, which is serving as the Secretariat for the World Lupus Federation. “Low awareness of lupus contributes to late diagnosis of the chronic and potentially life-threatening disease and places an additional boundary between people living with the incurable disease and their families, friends, and others who do not realize the many ways lupus can affect the body.”
Key findings include:
• More than a third of respondents (36%) admitted they did not know lupus is a disease
• More than half of respondents (51%) could not identify or did not know that lupus can result in serious health complications, such as kidney failure, anemia or a heart attack.
• More than a third of respondents (36%) indicated they did not know any factors that may contribute to someone developing the disease.
The survey revealed several social stigmas toward people living with lupus because of a misconception that lupus is contagious. For example:
• 47% feel less than ‘comfortable’ shaking hands with someone with lupus, compared with 36% who feel ‘very comfortable.’
• 44% feel less than ‘comfortable’ sitting next to someone on a bus who has lupus.
• 1 in 3 people (31%) are ‘uncomfortable’ sharing food with someone who has lupus underscoring that people strongly believe the disease is infectious. 23% of respondents are ‘uncomfortable’ hugging someone with lupus, with 11% of those respondents feeling ‘most uncomfortable.’
“When people hear that lupus is an autoimmune disease, they immediately equate it to other diseases of the immune system, like HIV and AIDS,” said Dr. Susan Manzi, Director of the Lupus Center of Excellence at the Allegheny Health Network in Pittsburgh, Pennsylvania, and medical director of the Lupus Foundation of America. “In the absence of knowledge, people mistakenly believe that lupus is a contagious disease.”
Raising awareness of lupus is a key objective of the WLF, which was organized to elevate lupus on the international stage and deliver a global rallying cry to bring greater attention and resources to combat lupus, a disease that affects more than five million people worldwide. As its first global initiative, the WLF is leading nearly 200 lupus patient groups in the annual observance of World Lupus Day on May 10.
“It is imperative that we unite lupus patient groups around the world to shine a light on the many issues affecting people living with lupus,” said Kirsten Lerstrøm, Chair of Lupus-Europe and a member of the international steering committee helping to form the WLF. “Through the coordinated efforts of its affiliates, the World Lupus Federation will increase awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf.”
The WLF unites lupus patient groups around the world to improve the quality of life for all people affected by lupus. The WLF is spearheaded by the Lupus Foundation of America and guided by an international steering committee representing five continents to ensure a coordinated effort among global lupus organizations and enhance their capacity to serve people with lupus through programs of education, awareness and advocacy.
“I congratulate all of the participating lupus organizations on the establishment of the World Lupus Federation,” said Julian Lennon, Global Ambassador for the Lupus Foundation of America. “This is a significant step forward in the global fight against this dreadful disease. I look forward to continuing to work to bring greater attention and awareness to the needs of people with lupus around the world.”
Individuals can help raise awareness of lupus and show their support by signing the petition to the World Health Organization urging them to make lupus an international health priority and ensure that people with lupus around the world are diagnosed and treated effectively.
To sign the petition, learn more about the global lupus awareness survey, and download resources to raise awareness and increase understanding of lupus signs and symptoms, visit the World Lupus Day website, www.worldlupusday.org.
Lupus is a chronic autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is mostly hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal.
About the Survey
The Survey was conducted by GSK and the results were shared as part of GSK’s ongoing efforts to assist the World Lupus Federation to raise global awareness of lupus. The online, six-question survey was carried out under subcontract by Yolo Communications, an international market research and social media insight agency between March 24th and April 8th 2016. The survey involved 16,911 adults 18+ from 16 nations: Argentina, Australia, Brazil, Canada, Denmark, Finland, France, Germany, Indonesia, Italy, Japan, Spain, South Korea, Switzerland, UK and USA (minimum of 1,000 respondents from each nation).
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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