Contact Us

It’s not uncommon to feel overwhelmed when dealing with a chronic medical condition, and we want you to know there are resources available to you. The Hydrocephalus Association provides programs and support services to connect you with peers, volunteers and medical professionals.

We provide one-on-one support, so please contact us:

Call the Hydrocephalus Association  Our toll free hotline: (888) 598-3789

email-icon1  E-mail:

Our staff shares knowledge that comes from personal experience with hydrocephalus and from talking with people who live with the condition. Our Medical Advisory Board is comprised of clinicians and scientists eager to answer your questions, speak to your concerns and share their knowledge of hydrocephalus. Expect a listening ear from staff and access to informed and current resources to help you understand and deal with the complexities of hydrocephalus.

HA Resources




Join us as we walk to spread awareness and raise funds to improve the lives of individuals affected by hydrocephalus. These one day events held in cities across the USA are a great way to meet others in the hydrocephalus community.

Community Network

Community Network

HA’s Community Network provides opportunities to get involved and connect at the local level. Our local networks host educational meetings, support group meetings, family fun events, and advocacy activities. Visit our Community Network page for information about your local Community Network.

Teens Take Charge (TTC)

Teens Take Charge

Teens Take Charge (TTC) teaches teenagers and young adults who are affected by hydrocephalus to advocate for themselves specifically with health professionals and with their legislators. If you are between the ages of 12 – 25, visit our TTC page to learn more.



HA publishes a variety of resources that provide current, relevant information about research, medical technologies and protocols, and educational resources. Our publications have been reviewed by medical professionals, giving you a trusted source for information.

Other Hydrocephalus Resources


Reach out to other organizations and hospitals for valuable information and support for individuals living with chronic medical conditions. Click here for resources for parents and teens. Click here for resources for adults.

10 Comments for : Contact Us
    • Mary Silva
    • March 10, 2018

    My mother exhibits the triad of unexplained symptoms, the initial gait disturbance, mild dementia and now finally urinary incontinence but apparently an absence of enlarged ventricles. Should further investigation be done? My mother’s doctor who is not a neurologist but a GP says she has ruled out NPH. I do not agree. I would like to know if enlarged ventricles are always evident? Do the triad of symptoms which are unexplained and of which the first dominant symptom of gait disturbance warrant further investigation. And should I demand a lumbar puncture and a copy of her Ct scan?

    • Mary L
    • March 9, 2018

    Also is it possible to rule out NPH with just an MRI

    • Susan
    • December 7, 2017

    Does anyone know of a good subacute rehab center after a shunt procedure in New Jersey. Need to find an inpatient facility.

    • Enniah
    • November 16, 2017

    my mother has it and three weeks after inserting a shunt she developed seizures.She couldnot talk or move and was in ICU.Is there a cure for the seizures.The doctor says its normal

  1. Reply

    Is their a support group for young adults in Oklahoma

  2. Reply

    I was born with cognitive? hydrocephalus.Also pre-mature;1lb. 11 oz. Had several operations as a newborn. Been in the hospital several times. Also had several health problems relted to my hydrocephalus:Eye problems;and other health issues. Had a twin;he passed on a few months after being born. Next month will be seeing a Neurologist for a specific test. Had a brain test in 1983 with wires glued to certain points on my head. Recently had a CT Scan where this futuristic spacelike machine takes pictures of my brain while lying flat. I was thinking of a particular science-fiction movie:Altered States in my subconscious. Requested a copy of the results. Similar to the first test I had?

    • Faris Marupov
    • August 6, 2017

    I am from Uzbekistan, I have a daughter, she is 3, she is hydrocephalus, she had 2 opearations 2 years ago. First was unsuccessful and after 6 months she had second one. She can`t walk and can`t speak. Nowadays she has strong trembling. she drinks stong medicine to stop trembling. Her head isn`t big, I sure you can help me and treat my daughter beg you help me to treat. I am ready for all kind of payment.

    • Ali
    • July 25, 2017

    All the walks seem to be in America
    Is there anything in the uk (London)

    • NPH patient
    • July 12, 2017

    I have NPH. I had a surgery to put VP Shunt about 5 years ago. I have heard that there is federal protection (from discrimination) for people with this disease.

  3. Reply


    My friends wife has this. How can I get some local info to help him?

    Living in Tampa Florida now.

    Thank you.

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