Hydrocephalus Canada

Registered Name: Hydrocephalus Canada

Business Number: 107999310RR0001

Our Purpose

Hydrocephalus Canada is the voice of Canadians living with hydrocephalus and spina bifida. We empower those impacted by these conditions to experience the best life possible by establishing environments that protect those at risk of developing hydrocephalus and support and enhance the lives of those living with hydrocephalus and spina bifida.

Hydrocephalus Canada is a trusted source for compassionate, progressive and innovative solutions. We focus our efforts on four areas of influence: awareness, education, support and research.

Hydrocephalus Canada develops education resources, support tools and services for individuals affected, their caregivers and healthcare professionals. We create solutions that support prevention, early and accurate diagnosis, access to appropriate treatment, advancement of new treatments, and optimal outcomes.

Hydrocephalus Canada is leading the efforts to:

  • increase awareness about hydrocephalus and spina bifida
  • create solutions to support prevention, early, accurate diagnosis, access to safe, effective and appropriate treatment, advancement of new treatments, optimal health outcomes
  • develop education resources and support tools for patients, caregivers and healthcare professionals
  • establish supportive communities that encourage inclusive, proactive conversations and activities
  • fund meaningful, impactful research

HYDROCEPHALUS CANADA is a registered charity, governed by a volunteer board of directors. We provide programs, services and direct support to children, youth, adults & families affected by the neurological conditions of hydrocephalus and spina bifida across Canada.

Hydrocephalus Canada has incorporated the Spina Bifida and Hydrocephalus Association of Ontario (SB&H) into our new focus. As Hydrocephalus Canada, the Association continues to offer the same valued programs and services that the Ontario community relies upon. But more than that, we are expanding our mandate to include the growing number of people across Canada living with hydrocephalus and normal pressure hydrocephalus (NPH).

Hydrocephalus Canada is not government or United Way funded and generates 100% of its revenue through fundraising initiatives. A small complement of employees and a multitude of community volunteers carry out the organization's work. 

What People Are Saying

"I am grateful for the opportunity to use music to unite the hydrocephalus and spina bifida communities. Hydrocephalus Canada created the space for me and others living with the conditions to be heard and to show our strengths."

— Danny, young adult with spina bifida and hydrocephalus

"Hydrocephalus Canada was and continues to be very supportive. They are who I turn to. They helped me understand that even though we are going through things and struggling, it doesn't define you--or your child."

— Charlene, mother of a child with spina bifida

"Without Hydrocephalus Canada's support and assistance, I don't know where I would be or if I would have actually got the help I needed..."

— Hailey, young adult with spina bifida, Read More

"We are forever thankful to Hydrocephalus Canada for the information and support provided to our family over the years. "

— Amy, mom to Emma, child with hydrocephalus, Read More

"As a member, I have come to rely on the association’s support and educational resources. The team has been most helpful in providing me with information about NPH and its potential long-term effects. It’s reassuring to know that the team is there for me anytime I need them."

— John, adult with Normal Pressure Hydrocephalus, Read More

Find Out More About This Charity