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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

IVH Parents

a/k/a: IVH

Address

P.O. Box 56-1111
Miami, FL 33256-1111

Phone

305-232-0381

Fax

305-232-9890

800 Number

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TDD

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The IVH Parents is a voluntary non-profit self-help organization dedicated to sharing information concerning intraventricular hemorrhages (IVHs) of the brain, providing support to affected individuals and their families, and conducting ongoing follow-up. Established in 1984, the group consists of parents as well as professionals who work with affected children including physicians from several specialties, therapists, nurses, researchers, and teachers. Intraventricular hemorrhage of the brain, or bleeding into the brain’s cerebrum, can occur after a premature birth or due to a traumatic full-term birth. Intraventricular hemorrhage may result in cerebral palsy, hydrocephalus, sensory loss, seizures, mental retardation, or multiple disabilities. IVH Parents enables families with affected children to network with one another in order to exchange information and mutual support. The organization also has a registry of children with IVH, provides a directory of members, and publishes a regular newsletter for parents and professionals.

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