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About Us
History & Mission
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Mission Letter
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FODs Defined
List of FODs & Symptoms
Diagnosis & Treatment
Emergency Protocol Letters
Newborn Screening
Newborn Screening Family Stories
Newborn Screening & Diagnostic Labs/Clinics
Newborn Screening Links & Resources
Medical Info
Description of Disorders
Urgent Info for ER Personnel
Information for Clinicians
Medical Info, Links & Resources
Information for Professionals
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If My Child is Sick
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FAQ
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Site Translator
Sites of Interest
MedicAlert
[has overseas' links, keeps protocol on file]
Med IDs
Medical ID Jewelry
Kid Safety Band [silicone]
Air Transportation/Lodging links for Families in need
National Patient Travel Center
[800-296-1217]
Traveling with Medications
USA Hospitals
List of international Children's Hospitals
Medline Plus Drug Information
Patient Assistance Programs for Meds/Formulas
Needy Meds
Aspirin & Salicylate-Containing Meds to Avoid
100% MCT Oil Supplement
[NOT used for all FODs!]
Diseases and Conditions Resource Directory
Mitochondrial Myopathy: An Energy Crisis in the Cells
Maternal and Child Health Library
Special Needs Equipment
G-tube Care: Tips and Tricks
Developmental Delay
Sensory Processing Disorder Articles
Complex Child E-magazine articles
My Special Needs Network
Speechville Express
Parents Helping Parents
Parent 2 Parent-USA [special needs info]
Kid Source Online: Estate Planning & The Special Needs Trust
Case Management Resource Guide
Family Voices
- children with special health care needs
Medical Home Portal
- Resources for special needs and chronic conditions
National Newborn Screening & Genetics Newborn Center
National Healthy Mothers, Healthy Babies Coalition
Regions 1-7 Newborn Screening and Genetics Collaboratives
- Family and Professional Resources in the US
Sudden Infant Death Syndrome (SIDS)
Sudden Unexplained Death in Childhood Program
Children's Cardiomyopathy Foundation
Exceptional Parent Magazine
The Father's Network
Genetic Alliance
Kennedy Krieger Institute
[Feeding Clinic]
Make A Wish Foundation
Children's Milk Allergy and GastroIntestinal Coalition
[Children's MAGIC]
LCHAD/TFP Stories and Information
Adam's LCHAD Home Page
National Center for Biotechnology Information
Angelman's Syndrome
Pediatrics In Review
Genetic Links Metabolic Clinics, Genetic Counselors, etc
Legal and Advocacy Resources
Patient Advocate Foundation
National Disability Rights Network
[health, legal etc]
Wrightslaw - Parent Advocacy: What you should do...and not do
Contact a Family (UK)
Carers of Great Britain/UK
National Reye's Syndrome Foundation of the United Kingdom
NSW Australian NBS Program
Genetic Support Network Victoria
[Australia]
Military Family Resource Center
Government/Legislative/Social Security Resources
US Government Gateway: Health and Families
US House of Representatives
US Senators