Talk to a person
It’s not unusual to feel overwhelmed. Our helpline staff listen, answer your questions and point you to the resources and programs that fit.
(888) 598-3789Toll-free, Monday to Friday, 9 am to 5 pm Eastern
Living with hydrocephalus comes with questions. We’re here for all of them.
Search more than a thousand trusted answers, or talk it through with someone who understands. We’re with you from the first scan to every year that follows.
Rather talk to a person?(888) 598-3789
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Start where you are
Hydrocephalus looks different at every age. Start with yours.
Choose who you are and we’ll show the guides, people and meetups that matter most right now.
I’m newly diagnosed
Take a breath. Start with the next step, not every step.
What to ask, what to watch for, and who to call, in the order you will need it.
- New hydrocephalus diagnosis: what to do next
- What is hydrocephalus?
- Questions for your doctor
- Hydrocephalus Next Steps Kit
Get support
Help, the way you need it today.
A person on the phone, a specialist near you, someone who has lived it, or a guide you can read at 2 am.
Find a doctor
Hydrocephalus specialists in the U.S. and Canada
A clinician who treats hydrocephalus?Join the physicians’ directory
Someone who has lived it
HydrocephalusCONNECT pairs you with a trained volunteer, by phone or email.
Prefer letters? Try the Pen Pal Program.
The Resource Library
Toolkits, medical guides and tips for daily life, sorted by who you are.
Browse the library
Learn from the experts
Free webinars with doctors and researchers, recorded so you can watch any time.
Swipe for more ways to get support
Find your community
Find your people, close to home.
Community NetworkWALK to End Hydrocephalus Online meetups open to every state
Online, wherever you are
- Oct 12Our Shared Journey: Parent Support Group, 8-9 pm ET
- Oct 14Grupo de Habla Hispana, 7-8 pm ET
- Oct 15Homeschool Connections: Supporting Every Learner, Every Family, 3-4 pm ET
Near you in
Texas
Community Networks
- Austin (Online)
- Dallas (Pediatric & Adult)
- Dallas (NPH)
- Houston
- Midland
WALK to End Hydrocephalus
Research
Research that changes what comes next.
Since 2009, HA has become the largest non-profit, non-governmental funder of hydrocephalus research in the United States, linking research from the lab bench to the bedside.
- invested by HA in research
- $17M+invested by HA in research
- in further grants won by HA-funded researchers and networks
- $95Min further grants won by HA-funded researchers and networks
- fewer shunt infections, from HA-funded clinical networks
- 36%fewer shunt infections, from HA-funded clinical networks
- research awards granted
- 169research awards granted
“The Hydrocephalus Association research program has built partnerships with NINDS and across the spectrum of research in a way that supports the development of new ideas, tools, and therapies designed to improve patient outcomes.”
In their own words
Finally running. Graduating. Walking without a shuffle.
Hydrocephalus can begin before birth or after sixty. These are three of the people who share their stories with HA.
Swipe for more stories
Your story could help someone tonight.
Stories are reviewed by HA staff and shared on the website and social media.
Get involved
Make waves with us.
Walk it, run it, say it to Congress, wear it. Every way you show up moves the work forward.
Give today
Your gift puts trusted answers and support within reach today, and funds research toward better treatments and a cure.
Give in honor or memory of someoneBoth open HA’s secure giving page, where you choose your amount.
In 2022, over 84% of HA’s operating expenses were used to support the mission.
