Patients and Families

General Sites and Non-Profit Organizations

Birth Defect Research for Children
Organization provides comprehensive fact sheets about birth defects, parent-to-parent matching opportunities and information resources. Maintains the National Birth Defect Registry.

Center for Disability Information and Referral (CeDIR)
Information about a wide variety of disability-related needs through print and video resources; bibliographies on topics such as “Personal Futures Planning for People with Disabilities,” “Siblings of People with Disabilities,” “Transition from School to Adult Living,” and more.

Children’s Hospital of Pittsburgh of UPMC's Child Health Library
Provides information about childhood injuries, diseases, developmental issues and treatment options with links to additional related online resources.

Children's Disabilities Information 
Web site offers families, service providers, and other interested individuals information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation covering a broad array of developmental, physical, and emotional disabilities. Features national calendar of events, children's page, as well as national, state, and local resources.

Disabled Sports USA
Information about DS/USA events and its nationwide sports rehabilitation programs open to anyone with a permanent physical disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events. Participants include those with visual impairments, amputations, spinal cord injury, dwarfism, multiple sclerosis, head injury, cerebral palsy, and other neuromuscular and orthopedic conditions.

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Easter Seals National Headquarters
Provides services (including medical rehabilitation, job training and employment, inclusive child care, adult day services, and recreation) to help children and adults with disabilities gain greater independence; 400 centers nationwide.

Family Friendly Fun and Special Needs Resources
Information to enhance the quality and enjoyment of family life with special needs children. This is a good example of many family-oriented sites which are maintained in specialized web-rings by the parents of special needs children. Most offer personal stories about their child’s illness, plus links of interest – these links can be particularly helpful to the parents of children with similar diseases/disabilities. This site belongs to more than twenty disability-related web-rings which can be accessed directly at: http://www.family-friendly-fun.com.

Family Village
Family Village is a comprehensive online community which integrates information, resources, and communication opportunities for people with cognitive and other disabilities, for their families, and for those who provide them with services and support. The library includes information about general diagnoses as well as hundreds of specific conditions and diseases. Users can click on a diagnosis to access the following information:

  • Who to Contact
  • Where to Go to Chat with Others
  • Learn More About It
  • Web Sites of Interest (In some cases, non-English sites are listed also)

The Fathers Network
Support and information (available in English and Spanish) of interest to fathers raising children with special health care needs and developmental disabilities.

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Internet Resources for Special Children (IRSC)
Information for parents, family members, caregivers, friends, educators, and medical professionals relating to the needs of children with disABILITIES. Links to facts about specific disorders, products, legal, educational and daily living issues, support groups and additional resources.

KidsHealth
Well-organized, easy-to-use site features a wide range of health and wellness information for parents, teens and kids. Some helpful topics include: dealing with feelings, kids' health problems, financial management during a medical crisis, caring for a child dependent on medical technology, preparing a child for a hospital visit/surgery, as well as a look at basic medical tests/exams.

March of Dime Birth Defects Foundation
National organization seeks to reduce infant mortality and the incidence of birth defects. Web site features downloadable, easy-to-understand fact sheets about specific birth defects; also access to its Resource Center, a toll-free service providing information and referral help from trained professionals concerning: birth defects, pregnancy, genetics, newborn care, etc.

NOAH: New York Online Access to Health
Unique collection of state, local and federal resources selected with consumers in mind. Searchers may select from a list of health topics which are then narrowed to include definitions, care and treatment, and lists of information resources. Many bilingual resources.

Our-Kids
Web site supporting the Our-Kids e-mail list, a "family” of more than 800 parents, caregivers and others working with children with physical and/or mental disabilities and delays.

Our-Kids-Adults
Support and information for parents and caregivers of teens and adults with disabilities.

Parent Education Network (PEN)
Pennsylvania coalition of parents of children range of disabilities and related conditions. PEN provides information, skills, and support to parents in helping children reach their full potential in educational, vocational and community settings. A wide range of resources are featured with emphasis on those located in Pennsylvania.

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Children With Special Needs
From About.com, this parent-oriented site is practical, up-to-date and easy to use; coverage includes a wide range of disease and disability issues, a weekly newsletter and message board.

Parents Helping Parents
Dedicated to meeting children's special needs through parents helping parents. Special features include: baby gift program, mentor parenting, support groups, community links and calendars, and an equipment exchange of adapted devices, durable medical equipment and other useful tools to enrich and/or enhance life for children with special needs.

Pennsylvania’s Initiative on Assistive Technology (PIAT)
Pennsylvania's statewide, cross-age, cross-disability program, PIAT seeks to improve access to assistive technology for all individuals with disabilities; operated through Temple University's Institute on Disabilities. Web site features calendar of training and events, plus access to Pennsylvania's Assistive Technology Lending Library (a free service that loans assistive technology devices to people with disabilities) and the Recycled Equipment Exchange Project (REEP – a classified listing of assistive technology to sell, buy, or donate).

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