Online Resources

The following list of links is divided into categories. As new articles and/or sites are found, they'll be added and marked as NEW! Not all the links will be useful to everyone, we simply wanted to provide single page access to as many references and resources as possible.

When you find something you think people with Noonan Syndrome and/or their caregivers could benefit from? Please let us know!

General Overview

Mayo Clinic A well written, easy to read description of the syndrome, symptoms and treatments
GeneReviews -- NCBI Bookshelf Part of GeneTests, a publicly funded (US) medical genetics information resource developed for physicians, other healthcare providers, and researchers. Article by Judith E Allanson, MD, Department of Genetics, Children's Hospital of Eastern Ontario
Genetics Home Reference Provides consumer-friendly information about the effects of genetic variations on human health.

Support Organizations / Online Groups

The Noonan Syndrome Support Group (TNSSG) (US)
   Your Noonan Connection - Online community created by TNSSG
CORD - Canadian Organization for Rare Disorders Canada's national network for organizations representing people with rare disorders.
NORD - National Organization for Rare Disorders, Inc. National Organization for Rare Disorders (US) is dedicated to helping people with rare, orphan diseases. The website contains information on the prevention, treatment and cure of rare diseases.
Children's Cardiomyopathy Foundation Dilated cardiomyopathy and child heart disease advocacy is explained by the Children’s Cardiomyopathy Foundation, a non-profit organization (US).
KidsAbility - Centre For Child Development (KW/Cambridge/Guelph, ON)
Bloorview Kids Rehab (GTA) Canada’s largest children’s rehabilitation teaching hospital fully affiliated with the University of Toronto.
    Bloom Bloorview's online newsletter
National Early Childhood Technical Assistance Center Early Intervention (US). Nectac serves all 50 states and 10 jurisdictions with an array of services and supports to improve service systems and outcomes for infants, toddlers, and preschool aged children with special needs and their families.
Children's Medical Insurance
CFC International Information about and raising awareness in the public, the medical community and families about Cardio-Facio-Cutaneous Syndrome. CFC presents very similar to NS
Parenting a Noonan Syndrome Child: Diagnosis and Patient Follow-up Crucial to Managing Rare Condition A personal account by Anne de Groot of spending 8 months fighting with doctors for an accurate diagnosis
Madisons Foundation Online resource connects parents whose children have the same rare disease
Partners HealthCare Center for Personalized Genetic Medicine (PCPGM) Harvard Medical School-Partners HealthCare Center for Genetics and Genomics
Firefly (Formerly CarePlace) Virtual support groups, social networking and information for medical conditions, journals, blogs and discussion forums
Facebook Group Promoting Awareness for Noonan Syndrome and Congenital Heart Defects

Medical Research

Genome Canada
Ontario Genomics Institute
Nature
genome.gov | Learning About Noonan Syndrome

Growth Hormones

Norditropin® (somatropin [rDNA origin] injection): NovoNordisk (US) Noonan Syndrome growth charts

Malignant Hyperthermia

A Guide to Malignant Hyperthermia (PDF)

Other Resources:

Online Mendelian Inheritance in Man ® (http://www.ncbi.nlm.nih.gov/omim) (OMIM) is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotypes. The full-text, referenced overviews in OMIM contain information on all known mendelian disorders and over 12,000 genes. OMIM focuses on the relationship between phenotype and genotype. It is updated daily, and the entries contain copious links to other genetics resources. (text from OMIM home page)