Board member of the Dutch Huntington Association (Vereniging van Huntington; VvH)
In the VvH board he is responsible for the themes ‘Research’ and ‘Youth’. On a regular basis he organizes and participates in (inter)national scientific and patient meetings. Besides that, he represents patients in various international clinical and care studies (e.g. Moving Forward, HD-COPE, HealthE-RND, Roche phase III clinical trial). In these studies, he shares his personal experiences; Rob is gene positive for HD and has seen is mother, grandmother, and other family members in various stages of the disease. He also shares these experiences as a patient speaker, where he shares how it is to have HD and the impact the disease has on a person’s life.