Nv WSWs

The Nederlandse Vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroom (NvWSWs) is a Dutch membership association supporting people born with a port-wine stain or living with Sturge-Weber syndrome, as well as their parents, caregivers and guardians. The association represents its members’ medical, social and societal interests, and provides information about port-wine stains, Sturge-Weber syndrome and related topics, including epilepsy, glaucoma and jaw abnormalities.

NvWSWs brings members together through events such as scientific conferences, contact days, discussion groups and information days. Its website shares news, event details and information and downloads for people seeking to learn more or connect with the association. Members can also take part in activities and receive a birthday card from the organization. NvWSWs invites supporters to contribute by becoming members or making donations. Through advocacy, information and opportunities for connection, the association aims to support individuals and families affected by these conditions and help address the challenges they may encounter in everyday life.