At LUPUS EUROPE, we do care about your data and your privacy. We do this through limiting the amount of information we collect and retain to the strict minimum to comply with legal and regulatory requirements and to enable us to serve you at best.

Website and Blog purpose:

LUPUS EUROPE’s website and blog presents the activities of the organisation and aims to provide free information for our member groups, people living with lupus, their relatives and friends.  LUPUS EUROPE’s  website and blog provides information to help capacity building and to keep visitors up to date with the most current developments in the lupus area, and to link them with other trustable sites providing such information.

Confidentiality of Website collected information:

Any information such as email addresses, telephone numbers and other related contact details that is collected through our website is kept strictly confidential and will not be shared with any third parties, unless required by law. Any information used is solely for the purpose of our own statistics. We do NOT keep sensitive information such as age, gender, whether you are a lupus patient or a family/friend, …. We do not give, transmit or sell any of our data to anyone, and do our best to keep your data confidential. 

LUPUS EUROPE Address database:

If you register to receive information from us by e-mail, we will keep the information collected in a mailing software (currently Mailchimp). This data collected is limited to the data we need to send you in a friendly way the most appropriate news : name and address, email, phone number, organisation and role,… You can limit further this information, unsubscribe or adjust any incorrect data at any time with the link  we attach to our mailing or by sending a request to secretariat@lupus-europe.org.

Transparency of Funding:

This website has been designed Pro Bono by Setfire a web design company that is not otherwise involved in LUPUS EUROPE’s activities. Our Web and blog on going operation costs (such as domain name registration, hosting etc.), as part of our operational activities, are funded by unrestricted grants from sponsors in line with our code of ethics and funding framework. Our website does not host any form of advertisement.

Editorial Content:

The editorial content of this website is managed and Controlled by LUPUS EUROPE’s Board of trustees. Most authors of this website are not medical doctors.  Any supplementary content that may be added which has been written by a medical doctor will be clearly stated.

What personal data we collect and why we collect it

Comments

When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.

Media

If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.

Cookies

If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

If you have an account and you log in to this site, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.

If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracing your interaction with the embedded content if you have an account and are logged in to that website.

How long we retain your data

If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.

For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.

What rights you have over your data

If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.

Where we send your data

Visitor comments may be checked through an automated spam detection service.

Additional information

What automated decision making and/or profiling we do with user data

We do segregate the issuance of mailing or information based on the preferences you have indicated in your profile, as well as based on the type of relation we have with you (as a member delegate, an industry partner, a health care professional, or a friend, for example). Aside from this simple sorting, we do not perform any type of profiling using the data you have provided us or that has been collected as mentioned above

Live Facebook Feed

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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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Comment on Facebook

2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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