Hydrocephalus is relentless. So are we.

"I want my son to know that he's never alone. I'm here for him no matter what."

— Carlos, father of Luke

Our Community Guides our Research Agenda

Our Top 20 Community Research Priorities have been categorized into 5 areas of focus:


Develop non-invasive and one-time therapies


Reduce the burden of current treatments


Improve the screening and diagnosis


Improve quality of life


Improve access to care

Let’s Navigate this together

Trusted resources to help you on your journey.


Recently Diagnosed?

Have you or a loved one recently been diagnosed with hydrocephalus?


Tools for Daily Life

Learn how to manage the day to day symptoms and challenges you might encounter on your journey with hydrocephalus.


Get Support

We're here to help! Find the support you need and talk to people who know what you're going through.

Driving Research Forward

Improving lives now and funding the breakthrough research of tomorrow.


$13 Million

Invested in research

$50 Million

Additional Federal Grants Awarded


Potential Drug Therapies

Make An Impact

We come together in so many ways — all of us driven by a passion to find a cure and improve the lives of those impacted by hydrocephalus. Whether you participate in a WALK to End Hydrocephalus or join our advocacy efforts, you’re making a difference!


Our community of patients and caregivers is there for you so you can connect, share life experiences, and find hope.


Researchers need input from people living with hydrocephalus in order to ask the right questions and develop treatments.


The best advocates are patients, family members, medical caregivers, and others who are directly affected by the condition.


Raise awareness about hydrocephalus and look great doing it!

Connect With Us

When you're ready, let's take the next step together. Stay informed with our monthly newsletter! We'll share inspiring stories, and information about our programs, events, and research.