Hylke Bosma

Hylke Bosma

Patient Expert (The Netherlands)

Hylke F. Bosma, MSc is a Board Member and former chairman of the Dutch patient organisation, Vereniging van Ehlers-Danlos Patiënten (VED), and responsible for medical questions and contact with the medical field. Hylke Bosma received a MSc in Biology with a specialisation in paleoecology from Utrecht University and a MSc in Forensic Science from the University of Amsterdam. Currently he is Faculty Education Coordinator the Faculty of Science, Leiden University and responsible for the Graduate School of Science and quality control. Hylke Bosma is also doing PhD research at Naturalis Biodiversity Center on Late Cretaceous conifers from the Northern Hemisphere.

The VED has currently about 1250 members. Since EDS is a genetic disorder and often only one of the family members  is a member of the association, we reach around 3 to 4000 people suffering from EDS in The Netherlands.  The estimated number of EDS patients in The Netherlands is around 5000. The VED has a medical advice board of 30–35 members, covering most of the medical specialities involved in EDS. Among other publications, the VED has published the book Ehlers Danlos syndroom, een multidisciplinaire benadering in 2005. Currently an English translation as well as an update of the Dutch version are being edited and expected to be published by the end of 2015.