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

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

🔊 Few days left for #RareDiseaseDay!

🌎 Join us and raise much-needed awareness to get early diagnoses for people who live with a #raredisease.

⬇️ You can download the materials done bRare Disease Dayay at buff.ly/4bMe753

#ShareYourColours
... See MoreSee Less

🔊 Few days left for #RareDiseaseDay!

🌎 Join us and raise much-needed awareness to get early diagnoses for people who live with a #RareDisease.

⬇️  You can download the materials done bRare Disease Dayay at https://buff.ly/4bMe753

#ShareYourColours
5 days ago
LUPUS EUROPE

🔊 Calling all #lupus patients!

🗣️Your voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference 🌍.

📣 ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients.

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

🎯 This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way.

🌟 Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

📚 The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

👉 If you're a Lupus patient, we invite you to participate in the survey, available in 14 languages.

🇩🇰 Danish: bit.ly/SLEStories_Danish
🇳🇱 Dutch: bit.ly/SLEStories_Dutch2
🇬🇧 English: buff.ly/3vbkRss
🇫🇮 Finnish: bit.ly/SLEStories_Finnish
🇬🇷 Greek: bit.ly/SLEStories_Greek
🇮🇸 Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹 Italian: bit.ly/SLEStories_Italian
🇱🇹 Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱 Polish: bit.ly/SLEStories_Polish
🇵🇱 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸 Spanish: bit.ly/SLEStories_Spanish
🇸🇰 Slovak: bit.ly/SLEStories_Slovak
🇫🇷 French: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French
🇩🇪 German: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German

💪 Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

🌟 Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe.

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
... See MoreSee Less

🔊 Calling all #lupus patients!

🗣️Your voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference 🌍.

📣 ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients. 

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

🎯 This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way. 

🌟 Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

📚 The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

👉 If youre a Lupus patient, we invite you to participate in the survey, available in 14 languages. 

🇩🇰 Danish: https://bit.ly/SLEStories_Danish 
🇳🇱 Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧 English: https://buff.ly/3vbkRss 
🇫🇮 Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷 Greek: https://bit.ly/SLEStories_Greek 
🇮🇸 Icelandic: https://bit.ly/SLEStories_Icelandic 
🇮🇹 Italian: https://bit.ly/SLEStories_Italian 
🇱🇹 Lithuanian: https://bit.ly/SLEStories_Lithuanian 
🇵🇱 Polish: https://bit.ly/SLEStories_Polish 
🇵🇱 Portuguese: https://bit.ly/SLEStories_Portuguese 
🇪🇸 Spanish: https://bit.ly/SLEStories_Spanish 
🇸🇰 Slovak: https://bit.ly/SLEStories_Slovak 
🇫🇷 French: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French 
🇩🇪 German: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German 

💪 Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

🌟 Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe. 

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
6 days ago
LUPUS EUROPE

🌟 Celebrating Silvia's Remarkable Achievement! 🌟

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! 🏆

Silvia's impactful work at tAsociación Española Síndrome Antifosfolipídico - SAF Españaaña (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatology’s PARE patient committee showcases her unwavering commitment to advocacy.

Silvia's journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make ⤵️

www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/

Let's join together in celebrating Silvia's well-deserved recognition! 🎉
... See MoreSee Less

🌟 Celebrating Silvias Remarkable Achievement! 🌟

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! 🏆

Silvias impactful work at tAsociación Española Síndrome Antifosfolipídico - SAF Españaaña (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatology’s PARE patient committee showcases her unwavering commitment to advocacy.

Silvias journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make ⤵️ 

https://www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/ 

Lets join together in celebrating Silvias well-deserved recognition! 🎉