Sunscreens survey update

There has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016.

images

The European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. LUPUS EUROPE has been closely involved in this important project.

The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. This project was winner in the category “Leadership Community” of the Galderma SKIN PACT Award 2015. Detailed information on the study, its purpose and background are provided here: http://www.galdermaskinpact.org/winners/sunscreen/.

An online questionnaire for patients has been translated into 20 European languages. Patients with any type of systemic lupus can fill out the survey. You can go to the survey at this link and participate in this important project:

http://www.euscle.org/survey.

 

facebookShare on Facebook
TwitterTweet
FollowFollow us

About the author

Alain Cornet

    Live Facebook Feed

    Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
    LUPUS EUROPE
    1 day ago
    LUPUS EUROPE

    🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.

    🥵 Are you tired of endless searches?
    😵‍💫 Do you feel overwhelmed by medical jargon?

    🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

    💫 Whether you're a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.

    🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.

    Visit s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!     ... See MoreSee Less

    🦋 Living with lupus can feel overwhelming when youre trying to sift through an ocean of information that may or may not be reliable. 🥵 Are you tired of endless searches? 😵‍💫 Do you feel overwhelmed by medical jargon? 🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information. 💫 Whether youre a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team. 🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak. Visit https://s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • likes 11
    • Shares: 3
    • Comments: 0

    0 CommentsComment on Facebook

    LUPUS EUROPE
    5 days ago
    LUPUS EUROPE

    ⁉️ Do you want to know more about diet & #lupus?

    ✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

    🔊 Whether you're looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, it's available in multiple European languages! Making it accessible to a wider audience.

    Check it out now! ⬇️

    lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

    🇩🇰 lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
    🇩🇪 lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
    🇪🇸 lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
    🇬🇷 lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
    🇫🇷 www.rhumatismes.net/index.php?id_q=854
    🇮🇹 lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
    🇱🇹 lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
    🇳🇱 lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
    🇵🇹 lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
    🇷🇴 lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
    🇫🇮 lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
    🇺🇦 lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
    🇷🇺 lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
    Catalan: lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus     ... See MoreSee Less

    ⁉️ Do you want to know more about diet & #lupus? ✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language. 🔊 Whether youre looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, its available in multiple European languages! Making it accessible to a wider audience. Check it out now! ⬇️ https://lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus 🇩🇰 https://lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus 🇩🇪 https://lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus 🇪🇸 https://lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus 🇬🇷 https://lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus 🇫🇷 https://www.rhumatismes.net/index.php?id_q=854 🇮🇹 https://lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus 🇱🇹 https://lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus 🇳🇱 https://lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus 🇵🇹 https://lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus 🇷🇴 https://lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus 🇫🇮 https://lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus 🇺🇦 https://lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus 🇷🇺 https://lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus Catalan: https://lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • likes 6
    • Shares: 2
    • Comments: 0

    0 CommentsComment on Facebook

    LUPUS EUROPE
    6 days ago
    LUPUS EUROPE

    ✅ Yes! As many of you guessed, the January theme of the #kicklupus campaign is... diet! One of the New Year's resolutions that is among the most commonly chosen by people every year.

    🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

    🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

    💪 Let's make this a year of health: join us in this challenge!

    📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.     ... See MoreSee Less

    ✅ Yes! As many of you guessed, the January theme of the #KickLupus campaign is... diet! One of the New Years resolutions that is among the most commonly chosen by people every year. 🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being. 🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus. 💪 Lets make this a year of health: join us in this challenge! 📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • likes 15
    • Shares: 3
    • Comments: 1

    1 CommentsComment on Facebook

    LUPUS EUROPE
    1 week ago
    LUPUS EUROPE

    🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

    ✅ Adjustments & updates are normal and expected.

    We appreciate your understanding & support as we fine-tune our tool to better meet your needs.     ... See MoreSee Less

    🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT. ✅ Adjustments & updates are normal and expected. We appreciate your understanding & support as we fine-tune our tool to better meet your needs.
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments
    • likes 15
    • Shares: 0
    • Comments: 1

    1 CommentComment on Facebook

    I come from a Pacific Island nation called Papua New Guinea. My country shares borders with Indonesia, Australia, and the Solomon Islands. I usually search on YouTube for interesting documentaries. Whilst looking up YouTube videos, I came across a documentary on people who suffer from SLE Lupus disease and their real treatment from www. multivitamincare .org. I had never heard of this crippling and debilitating disease affecting a lot of American Europeans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralyzed, Parkinson's disease, COPD, ALS, cancer, etc., but I also get to understand that there has been a successful cure for this disease from www. multivitamin care. org It is too much for a patient to endure, such as they slowly begin to pass away if the right medication is not taken . Having a positive mind is a powerful tool . My prayers go out to Lupus patients and their caregivers.

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send