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.
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.
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 |
Ohio | Hydrocephalus Association - Northeast Ohio Affiliate |
Expansion Program Advisory Groups: | |
Arizona | Barrow NPH Support Group |
Massachusetts | Hydrocephalus Foundation, Inc. |
Missouri | Hydrocephalus Support Group, Inc. |
Groups we informally mentor: | |
New Jersey | Hydrocephalus Support Group |
Illinois | Chicago Hydrocephalus Support Group |
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.