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Genetics & Complex Health Care Needs Resources


Fetal Alcohol Syndrome

National Organization on Fetal Alcohol Syndrome
Site from NOFAS, the only organization focused solely on Fetal Alcohol Syndrome, has information on FAS as well as tips for parents raising children affected by the syndrome.
Family Village's FAS Library
A list of online and offline FAS resources and organizations.
Frequently Asked Questions about FAS
Answers a variety of questions on FAS.

Down Syndrome

MedlinePlus Down Syndrome
Extensive resources on all aspects of Down Syndrome with links to prevention/screening, specific conditions and issues, clinical trials, genetics, reference materials and organizations.
Down Syndrome: Health Issues
Author's note: I'm a pediatrician and the father of Avi, 6 years old, and Nathan, 8 years old. Avi has Down Syndrome ("DS" for short) and has inspired me to write these essays about children with DS for other parents. I have put them here for general reading.
Down Syndrome for New Parents
Resource for new parents of a child with Down Syndrome.
Down Syndrome Sites On the Internet
Comprehensive list of Down Syndrome sites and resources.


MedlinePlus Autism
Extensive consumer health resource on all aspects of Autism spectrum disorders with links to latest news, diagnosis/symptoms, treatment, alternative therapy, coping, clinical trials, genetics, reference materials and organizations.
What are Autism Spectrum Disorders?
This site, from the Autism Society of American, answers questions such as what is autism, are there different types of autism, and how is autism diagnosed.
Autism Primer
Twenty questions on autism -- covers facts of the disorder, plus how to help people with autism learn and work.

Craniofacial Birth Defects/Cleft Palate

National Craniofacial Association: Disorders
Information on many disorders commonly associated with Craniofacial Birth Defects, including Goldenhar Syndrome, Hydrocephalus, and Cleft Lip & Palate.
SMILES: A Cleft Lip & Palate Support Group
Information on Cleft Lip & Cleft Palate management, Otolarynology, and effects on speech.
The Cleft Lip, Cleft Palate and Craniofacial Deformities Resources
Has answer to different questions about Cleft Lip and Cleft Palate, along with information for new parents, etc.
Cleft Palate Foundation- Patient Information
Fact sheets and full-text online reports on cleft lip and palate.
Cleft Adovocate
Answers many questions about cleft palate, including questions about surgeries and treatments.
Childrens Craniofacial Association (CCA)
CCA's mission is to empower and give hope to facially disfigured children and their families. Site has general information about Craniofacial Syndrome.

Neural Tube Defects/Central Nervous System Conditions

MedlinePlus Spina Bifida
Extensive resource on all aspects of spina bifida with links to overviews, treatement, prevention/screening, clinincal trials, journal articles, directories, and organizations.
Children and Adults With Spina Bifida and Hydrocephalus
A resource page for parents of children with Spina Bifida.  Has links to SB organizations and articles, among other features.
Association for Spina Bifida and Hydrocephalus
Covers aspects of both SB and Hydrocephalus, including information for parents and prevention of these disorders.
Spina Bifida Association of America
SBAA provides services such as a toll-free 800 Information and Referral Service, a bi-monthly newsletter, and many useful links.
Hydrocephalus Center
Offers general information, suggested reading, links, and more.
Hydrocephalus Foundation, Inc.
Established to help assist patients and their families during the transition from their diagnosis to a resumption of their normal lifestyles. Has facts and statistics about Hydrocephalus.
Hydrocephalus Fact Sheet
The Hydrocephalus Association aims to provide support, education, and advocacy for individuals, families, and professionals.  The HA offers a free informational brochure on Hydrocephalus.

Mental Retardation

The ARC (Association for Retarded Citizens)
The ARC is a national organization committed to the welfare of all people with mental retardation and related developmental disabilities and their families.
MedlinePlus Developmental Disabilities
Extenisve resources on all aspects of developmental disabilities with links to the latest news, general overview,clinical trials, coping,diagnosis and symptoms, resparch, specific conditions, law and policy, organizations, children,and seniors. Some materials are in Spanish.
Intellectual Disability
Webpages from the CDC and national Cener on Birth Defects and Developmental Disabilities which explains how this is defined, how common it is, and provides resources to help intellectually disabled people to develop to their full potential.

Genetic and Complex Conditions - Large Databases 

Alliance of Genetic Support Groups
The Alliance of Genetic Support Group is a nonprofit national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.
Family Village
A global community of disability-related resources.
Exceptional Parent Magazine
A resource magazine dedicated to families with special needs children.
National Institutes of Health
The goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.
National Library of Medicine
World's largest medical library. Has an online catalog, databases, etc.
National Organization for Rare Diseases
National Organization of Rare Diseases offers database of rare conditions and resources.
MedicineNet is a network offering health related information.
The National Information Center for Children and Youth with Disabilities (NICHCY)
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.

The information furnished by the Childrens Virtual Hospital at Providence is of a general nature and is designed for educational purposes only. As each situation is unique, do not rely on this information for diagnosis and treatment. The Childrens Hospital at Providence recommends that you visit a qualified Health Care Professional for individual and personal attention.