Hydrocephalus Support

The Association provides one-on-one support services through a toll-free hotline (888) 598-3789 and e-mail correspondence. We have recently strengthened our approach to creating a nationwide network of support by creating our HA Partners Network. These partners provide support and various selfless services at the local, community level. The Hydrocephalus Association also encourages sharing wisdom and personal experiences by networking through various social media platforms, Facebook, Twitter, Youtube, Pinterest

The Hydrocephalus Association’s staff are not medical professionals and do not offer medical advice. Rather, we share knowledge that comes from personal experience and talking with people who live with hydrocephalus in all its manifestations. From our staff, you can expect a listening ear, and access to a wealth of resources to help you understand and deal with the complexities of hydrocephalus.

Toll-free Hotline

Feel free to call our toll-free support hotline (888) 598-3789 with your questions and concerns. Note that our office is staffed from 9:00 a.m. to 5:30 p.m. Eastern Standard Time. Your call will be directed to the appropriate staff who are ready and willing to help.

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Email Support

If our published information available on this site does not answer your questions, we welcome your specific questions and concerns via e-mail.  Keep in mind that our staff are not medical professionals.

If you are unable to access our booklets and fact sheets online, we will be happy to mail the information to you.  Please e-mail with your full name and address and let us know what information you need.

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Community Network

HA’s Community Network provides support, education and empowerment through sharing experiences and connecting with medical professionals to answer your questions. These local networks host educational meetings, support group meetings and family fun events. Visit our Community Network page for information about your local Community Network.

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WALK Events

Join us as we walk to spread awareness to 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. Visit our WALK page for information about your local WALK.  If there’s not an HA WALK in your community, you can still participate as a “virtual walker.”

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Peer Network

Many members of the Association seek connection to other individuals and families living with hydrocephalus. This is a great way to create mutual support, share learning gained through similar experience and build community. To encourage and facilitate this, we have developed a nationwide network of people who are willing to share, listen, empower and assist. Please visit our social media pages to access this valuable support network to read stories of others living with hydrocephalus. You can also contact our office via phone or e-mail for networking assistance.

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Teens Take Charge

The Hydrocephalus Association’s new program – Teens Take Charge (TTC) – trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to become self-advocates with both health professionals and with their legislators. The program provides support, trainings, and awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. HA has created a place for teens and young adults (ages 12 to 25) to talk via Facebook and Twitter. Many are sharing their inspiring stories on the TTC Blog, go check it out! Join us and help create a community of teens making changes happen!

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