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Edwin and Joyce
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Resources

Advocacy/Network Organizations for Parents
Service Providers
Newsletters
Informational/Educational Websites
Guidebooks
Resources within the NFI Website


Advocacy/Network Organizations for Parents of Premature Infants

(for a full list see the Directory-of-Family-Organizations)

  • Canadian Premature Babies Foundation: This organization seeks to prevent preterm birth through education and research: supports the best standards of care for premature babies; and gives premature babies and their families a voice across Canada.
  • European Foundation for the Care of Newborn Infants: The European Foundation for the Care of Newborn Infants (EFCNI) is a pan-European organization representing parents and scientific experts with the aim of improving the long-term care of preterm and newborn infants with illnesses and support for their families.
  • March of Dimes: Prematurity:  This nonprofit organization for pregnancy and baby health is dedicated to preventing birth defects, premature birth and infant mortality. The web site has sections tailored to NICU families, along with personal stories from families and a place to share your story with others.
  • Preemie Parent Alliance (PPA): The PPA represents US organizations that provide support to parents of preemies. Each of its member organizations are run by parents of preemies and provide resources, support and information for families of premature infants. See the “Meet our Members” page for a listing of many parent organizations across the United States.
  • PreemieWorld: PreemieWorld was created to help bridge the gap between parent and professional in the NICU, at home and beyond.  With books, videos, and other products and tools, the hope is to make everyone’s life just a little bit easier as the “new normal” is created in the life of the preemie and his/her family.
  • ZERO TO THREE:  This national nonprofit promotes the health and development of infants and toddlers by informing, training and supporting parents, professionals and policymakers. (Note: Complete the free registration to get full access to the site’s online resources.)


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Service Providers

  • Early Intervention: Early Intervention (EI) is a US based, nationwide program. Under federal law entitled Individuals with Disabilities Education Act (IDEA) –Part C, each state and territory of the US is required to ensure that appropriate early intervention services are made available to all eligible birth-through-2-year-olds with disabilities and their families. Most children born preterm meeting criteria for EI services and should be evaluated for developmental support. Each state has their own EI program and your local provider can be found at www.ectacenter.org/contact/ptccoord.asp. For a complete description of the program please visit: www2.ed.gov/programs/osepeip/index.html

Newsletters

Informational/Educational Websites

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Guidebooks

General

Personal books by parents

Children’s books

Resources within the NFI Website

Our Stories
Videos
Developmental Observer
NIDCAP Blog

 

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