Rianne Oostenbrink is an Associate Professor in the Department of General Pediatrics, at Erasmus MC in Rotterdam, The Netherlands, and works as a general pediatrician in the outpatient clinic and pediatric emergency department. She is the coordinator of the ENCORE-NF1 expertise centre at Erasmus MC, a collaborative, multidisciplinary team for inherited neuro-cognitive developmental diseases, which leads the national NF1 clinical network in the Netherlands. She is developing a clinical pathway for children and adults with NF1. She has organised the national shared-care for NF1 in the Netherlands, in collaboration with the VSOP (organisation for collaborating patient organisations) and NFVN (NF Organisation of Netherlands).
Dr. Oostenbrink’s research experience is in the field of clinical decision making, clinical epidemiology, and clinical trials. She is the leader for the WP7 Neurofibromatosis work-package in the EU-PEARL project (IMI2-RIA funding, Platform trials for the development of treatments of complications in NF).
She participates in research on neurocognitive, behavioral, developmental, and social problems in children with NF1 within ENCORE.
In collaboration with the Dutch Society for Neurofibromatosis (NFVN) and the VSOP she contributes to several projects, including developing NF1 informational materials for patients and parents, e-learning projects for health care professionals, the National Standard of Care for NF1 patients, and the national NF1 guidelines.
Dr. Oostenbrink’s professional affiliations include: ERN GENTURIS, European Neurofibromatosis Group (ENFG), Dutch Society of Epidemiologie (Vereniging voor Epidemiologie VvE), and the Medical Advisory Board of the Dutch National Neurofibromatosis Committee.