Support

The Association provides one-on-one support services through a toll-free hotline (888) 598-3789 and e-mail correspondence. Our expansion pilot program is creating local support groups with our first two pilot groups in Ohio and Florida. The Hydrocephalus Association also encourages sharing wisdom and personal experiences by networking through GabrielsLife.org

Members of the Association support 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 8:30 a.m. to 5 p.m. Your call will be directed to the appropriate support staff who are ready and willing to help.

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E-mail 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 support 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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Local Support Groups:

Through our Regional Support Group Expansion Program, the Association is developing local hydrocephalus support groups around the country. Two groups are testing formal affiliation with the Association, three groups are advising our Expansion Program and a number of groups are informally mentored. Our goal is to build Affiliates of the Association around the country who share our commitment to integrity, quality and responsiveness. We welcome your feedback or inquiries on starting a support group or aligning more closely with the Association through our Expansion Program.

Hydrocephalus Association Affiliate Regional Support Groups:

Florida

Hydrocephalus Association – Tampa Bay Affiliate
Provide support for all age groups. Hold regular support group meetings. 
tampabayfl@hydroassoc.org or (727) 637-5585

Ohio

Hydrocephalus Association - Northeast Ohio Affiliate
Provide support for all age groups. Hold regular support group meetings.
NEOhio@hydroassoc.org or (216) 466-1827

Expansion Program Advisory Groups:

Arizona

Barrow NPH Support Group
Focus on Normal Pressure Hydrocephalus. Hold regular group meetings.
Margaret.Varland@CHW.EDU or (602) 406-7585

Massachusetts

Hydrocephalus Foundation, Inc.
Provide support for all age groups.
hyfii@netscape.net or (781) 942-1161

Missouri

Hydrocephalus Support Group, Inc.
Provides support for all age groups. Holds periodic meetings and annual day long conference.
hydrodb@earthlink.net or (636) 532-8228

Groups we informally mentor:

New Jersey

Hydrocephalus Support Group
Pediatrics only. Monthly support group meetings for parents.
kai0424@aol.com (732) 321-7000 x65362

Illinois

Chicago Hydrocephalus Support Group
Pediatrics and young adults living with hydrocephalus.
sherryiab@yahoo.com

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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 GabrielsLife.org 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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