Description

Spina-bifida hydrocéphalie Québec (SBHQ) is a provincial non-profit organization dedicated to improving the quality of life, inclusion, and well-being of individuals living with spina bifida and hydrocephalus, as well as their families and caregivers. Founded nearly 50 years ago, SBHQ provides information, support, advocacy, community programming, and referral services across Quebec.

The organization works closely with healthcare professionals, researchers, rehabilitation specialists, educators, community organizations, and public institutions to address the diverse realities experienced throughout the lifespan — from prenatal diagnosis and childhood to adulthood, transition, employment, aging, and independent living.
SBHQ also plays an important role in awareness and prevention initiatives, particularly regarding folic acid and neural tube defect prevention, while promoting accessibility, social participation, and equitable access to care and services.

Through its activities, support networks, educational initiatives, conferences, and partnerships, SBHQ reaches hundreds of families and individuals every year and contributes to strengthening connections between the medical, scientific, and lived-experience communities.