About lupus suisse
A patient organisation for people affected by lupus
lupus suisse is a Swiss patient organisation for people affected by the rare disease systemic lupus erythematosus (SLE).
lupus suisse is a member of the Swiss League Against Rheumatism (rheumatic diseases) and ProRaris (rare diseases).
Most specialist questions can now be answered easily online, thanks to artificial intelligence.
However, lupus suisse offers more: reliable information and sound expertise tailored to members’ needs. You can access this information at home via this website, through our newsletter, or through the popular printed magazine «lupus».
In addition, lupus suisse enables you to connect with other people affected by joining a regional self-help group or taking part in workshops.
Sharing experiences and knowing that you are not alone with the disease has a positive impact on coping with illness-related burdens and on quality of life.
Origins
lupus suisse is a patient organisation by people affected, for people affected and their relatives.
lupus suisse was founded in 1987 by committed female patients and has continued to develop over time.
In 2013, the newsletter became the professionally printed and very popular magazine «lupus», published from the outset in German and French.
Since 2014, lupus suisse has had its own website, which was redesigned in 2026. In addition, since 2022 members have been receiving the newsletter regularly by email. It is written in German, French and Italian.
Max and Marie-Louise Hagen contributed greatly to this development in their roles as association president and editor-in-chief of the magazine «lupus». Since 2024, a new team has been working with great commitment for the association.
Until 2021, the association was called «Swiss Lupus Erythematosus Association SLEV». In the 2010s, lupus suisse became established.
The secretariat is managed by the Swiss League Against Rheumatism (SLAR).
Lupus Europe meeting 2012.
Two Workshops per Year
lupus suisse organizes two workshops annually in cooperation with specialists.
Workshops address specific lupus topics. Expert speakers provide a comprehensive overview of the subjects. This is followed by group work sessions where everyone can contribute and a lively exchange of experiences takes place. This helps build strong relationships with fellow patients and like-minded individuals.
Due to the group work format, the number of participants is limited to 16 to 24.
Workshops are an excellent introduction for new members. However, since new findings emerge regularly, attending workshops every 3–4 years is also beneficial for other members. Relatives are also welcome! They provide valuable psychological support for those living with lupus.
Lupus Magazine
The bilingual magazine “lupus” is published twice a year in German and French. The magazine addresses current topics and features contributions from healthcare professionals and those affected.
Regional Groups & Contacts
Self-help groups and contact points exist in various locations throughout Switzerland and meet periodically. These are important institutions in the healthcare system, as they promote mutual support and create awareness that “I am not alone.”
Information Services
Experienced members willingly provide information within the network (regional groups/contact points).
Please note that we cannot provide medically or legally reliable information. However, we are happy to refer you to specialists or appropriate organizations.