Caroline Van Mourik

Caroline Van Mourik

Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)

Caroline van Mourik is the scientific editor of the Swedish patient organisation. She grew up in Belgium, studied in Belgium and the Netherlands (BEd in Biology & Environmental Science, a MSc in Biology & Paleoecology). In 1998 she moved to Sweden as she got a PhD position.

During her PhD studies she got “presumed” bilateral Tarsaltunnel syndrome and got in a wheelchair. She designed an extra front wheel, which made it possible to still get into the field and obtained her PhD in 2006 (Marine Geosciences, micropaleontology). It was not until 2008 she got the diagnose EDS, which explained all odd health problems she had since birth.

Within month she made a first version of a “medical form”, a four pages long PDF-form which can be filled in on-line, which she send to the Swedish patient-organisation. This was a fast track to getting involved in the patient organisation as (vice) president. Her main interest has been producing and spreading information (in Swedish). The most comprehensive projects are My Book about EDS which aims at people with EDS and their carers and EDS IN FOCUS, a biannual newsletter for health professionals. Both are completely open access and can be downloaded from

This way of working makes it possibility to publish one chapter/newsletter at the time as well as to easily update them when new research becomes available. Both are based on the most recent literature and reviewed by experts. An oral presentation about this way of working was given at the 1st International Symposium on EDS in Ghent in 2012 as well as a poster where an English version of the “medical form” was presented. During 2012-2013 Caroline was the project leader for the 5th Nordic conference which was held in Uppsala 2013.

At present she aims to work 75% (as a temporary analyst at “Swedish Agency for Health and Care Services Analysis”), and the other 25% for training (Kayaking, horseback riding, (sit)skiing and “boring exercises at home”).