Patients and Families

Specific Disease, Condition and Syndrome Information

Cerebral Palsy: A Multimedia Tutorial for Children and Parents
Basic level information about CP presented through photos and other media.

Cerebral Palsy Network
Wide range of links and information resources for individuals and families affected by cerebral palsy, or those interested in learning more about this condition.

CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder)
Features medical information, updates on current research, fact sheets, chat room and links to related sources.

Children with Spina Bifida: A Resource Page for Parents
Useful, well-maintained site provides broad range of information and resources to parents of children with spina bifida. Part of the Discovering Spina Bifida web ring.

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Children’s Craniofacial Association
Information and services for children with facial difference/disfigurement and their families.

CP Resource Center
Well-organized, readable resource linking families to information about all aspects of cerebral palsy; includes a comprehensive FAQ, dictionary, links, and much more. Features overview of material presented in Cerebral Palsy: A Guide for Care by Miller, Bachrach, et al, published by Hopkins Press.

How Can I Help?
Information for friends and relatives of children with cerebral palsy from the Cerebral Palsy Association of Western Australia Ltd.

Hydrocephalus Association
Organization offers one-to-one telephone support plus a broad range of educational materials for families and individuals affected by hydrocephalus.

Insights into Spina Bifida (Newsletter of the Spina Bifida Association of America)
Articles available online (with Acrobat Reader) include coverage of topics such as: enhancing social skills development; latex allergy and latex safety at school; academic success; technology; obesity; searching for fun and games.

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Klippel-Feil Connection Online
Information about this condition which involves congenital fusion of at least two of the seven vertebrae in the cervical-spine.

Latex Allergy Links
A comprehensive and up-to-date listing of latex allergy-related web sites plus references to relevant books and articles.

LD Online
Site is an interactive guide to learning disabilities and attention deficit disorders for parents, teachers and children. Features news, newsletter, “Kid Zone,” checklists, articles, discussion areas and more.
 

Learning Disabilities Association of America
Pittsburgh-based, nation's largest non-profit volunteer organization advocating for individuals with learning disabilities. Web site offers up-to-date calendar of events, links, news bulletin and fact sheets, plus a comprehensive array of books, videos and other resources for purchase.

Lipomyelomeningocele Family Support Network
Information and support for families and individuals affected by Occult Spinal Dysraphisms (i.e., Tethered Cord, Lipomyelomeningocele, Fatty Filume Terminal, Diastematymelia, and others).

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National Association for Parents of the Visually Impaired
Support and information for parents of children with visual impairments.

National Center for Learning Disabilities
News, fact sheets, research reports, screening tools and other information about learning disabilities.

Parents of Premature Babies
Information and access to support for families with children born six weeks or more before due date; features direct link to “Preemie-L” mailing list.

Spina Bifida Association of America
Families of children with spina bifida can find medical information, research and educational updates, plus access to local support groups.

United Ostomy Association, Inc.
Volunteer-based health organization providing education, information, support and advocacy for individuals (and their families) who have had or will have intestinal or urinary diversions. Links to suppliers, online magazine, support groups and more.

Urinary Incontinence in Children
Information about incontinence and other bladder disturbances from the National Kidney and Urologic Diseases Information Clearinghouse.

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Last Update
September 4, 2013
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Last Update
September 4, 2013
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