About us
There are several ciliopathy patient advocacy groups in the Netherlands including the Alström Syndrome Foundation, the Bardet-Biedl Syndrome Foundation, the Joubert Syndrome Foundation Netherlands and the Dutch Kidney Patients Association (NVN). The overlapping etiology of these rare disorders warrants our initiative to join forces towards knowledge exchange, research, education, fundraising and patient advocacy by connecting the different patient advocacy groups with clinicians, researchers and specialists in the ciliopathy field. CilNetNL thus strengthens the ciliopathy community within the Netherlands and Europe, improves communication and collaboration with doctors and scientists, and promotes awareness for ciliopathies.
The Organizing Team
As the organizing team of the Ciliopathy Network Netherlands (CilNetNL), our primary commitment is to foster transdisciplinary interactions among stakeholders, bridging the gap between research and patient care within the ciliopathy field.
Dr Gisela Slaats (in the left image on the left) is an assistant professor in the Nephrology department of the Utrecht UMC.
Prof Dr Ronald Roepman (in the left image in the middle) is a Professor at the RadboudUMC in Nijmegen and principal investigator of the Roepman Lab.
Dr Marijn Stokman (in the left image on the right) is a clinical geneticist at the RadboudUMC in Nijmegen.
Dr Bendert de Graaf (right image) is chairman of the board of the Bardet-Biedl Syndroom Stichting.
