Sunscreens survey

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.

Please share the survey link to any lupus patients you know. The survey will be open until end of October 2016.

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
    Author Avatar
    LUPUS EUROPE
    6 days ago

    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     ... See MoreSee Less

    Image attachment
    Image attachment
    Image attachment
    Image attachment
    Image attachment
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 25 Shares: 7 Comments: 0

    0 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    7 days ago

    #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

    f.mtr.cool/iyctvzvvtj     ... See MoreSee Less

    #Lupus is a #RareDis
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 39 Shares: 17 Comments: 1

    1 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    7 days ago

    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     ... See MoreSee Less

    Today is #RareDiseas
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 54 Shares: 32 Comments: 4

    4 CommentsComment on Facebook

    Author Avatar
    LUPUS EUROPE
    2 weeks ago

    😃 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/     ... See MoreSee Less

    Play
    View on Facebook
    · Share
    Share on Facebook Share on Twitter Share on Linked In Share by Email
    View Comments likes love 22 Shares: 4 Comments: 0

    0 CommentsComment on Facebook

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send