Von Hippel-Lindau (VHL) disease is a rare hereditary tumour syndrome, associated with a large burden, both physical and psychosocial. We aim to support patients in Europe living with VHL disease, through education, peer support, and evidence-based advocacy, through a coordinated federation of national patient groups.
VHL Europa is a non-profit umbrella organisation, registered in the Netherlands, focused on supporting European patients, families, and caregivers affected by Von Hippel-Lindau disease (VHL). Founded in 2014, our mission is to improve quality of life and health outcomes for VHL patients, families, and caregivers through community building, and supporting our member organisations to improve their local capacity.
