Email to join the Children’s Hydrocephalus Support Group. We’ll let you know about meetings and mail a quarterly newsletter. We can also send support group meeting notes if you can’t be present physically.

In addition, one of the most frustrating problems regarding hydrocephalus is the lack of a national database of patients with hydrocephalus. We could possibly get the National Institutes of Health to fund some research if anyone could quantify the problem of hydrocephalus accurately. It has been reported recently that hydrocephalus costs the nation $1 billion dollars annually in health care but we need more data.

We believe that if we start to understand the impact of hydrocephalus in our region, it will be invaluable. We will also collect data about your child’s hydrocephalus but not with any name or personal information attached so you will have complete confidentiality. This of course will be optional but we urge you to share information about your child so that we can start to understand more about hydrocephalus on a greater level than individually.