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Genetics & Complex Health Care Needs Resources

 

Fetal Alcohol Syndrome

 
National Organization on Fetal Alcohol Syndrome
www.nofas.org
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
www.familyvillage.wisc.edu/lib_fas.htm
A list of online and offline FAS resources and organizations.
 
Frequently Asked Questions about FAS
www.come-over.to/FAS/fasFAQ.htm
Answers a variety of questions on FAS.
 

Down Syndrome

 
MedlinePlus Down Syndrome
www.nlm.nih.gov/medlineplus/downsyndrome.html
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
www.ds-health.com/
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
www.downsyn.com
Resource for new parents of a child with Down Syndrome.
 
Down Syndrome Sites On the Internet
www.ds-health.com/ds_sites.htm
Comprehensive list of Down Syndrome sites and resources.
 

Autism

 
MedlinePlus Autism
www.nlm.nih.gov/medlineplus/autism.html
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?
www.autism-society.org/site/PageServer?pagename=about_whatis
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
http://www.teacch.com/info_primer.html
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
www.faces-cranio.org/Disord.htm
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
www.cleft.org
Information on Cleft Lip & Cleft Palate management, Otolarynology, and effects on speech.
 
The Cleft Lip, Cleft Palate and Craniofacial Deformities Resources
www.widesmiles.org
Has answer to different questions about Cleft Lip and Cleft Palate, along with information for new parents, etc.
 
Cleft Palate Foundation- Patient Information
www.cleftline.org
Fact sheets and full-text online reports on cleft lip and palate.
 
Cleft Adovocate
www.cleftadvocate.com
Answers many questions about cleft palate, including questions about surgeries and treatments.
 
Childrens Craniofacial Association (CCA)
www.ccakids.com
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
www.nlm.nih.gov/medlineplus/spinabifida.html
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
http://www.waisman.wisc.edu/~rowley/sb-kids/
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
www.asbah.org
Covers aspects of both SB and Hydrocephalus, including information for parents and prevention of these disorders.
 
Spina Bifida Association of America
www.sbaa.org
SBAA provides services such as a toll-free 800 Information and Referral Service, a bi-monthly newsletter, and many useful links.
 
Hydrocephalus Center
www.patientcenters.com/hydrocephalus/
Offers general information, suggested reading, links, and more.
 
Hydrocephalus Foundation, Inc.
www.hydrocephalus.org/
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
www.hydroassoc.org/
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)
www.thearc.org
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
www.nlm.nih.gov/medlineplus/developmentaldisabilities.html
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
www.cdc.gov/ncbddd/dd/ddmr.hmtl
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
www.geneticalliance.org
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
www.familyvillage.wisc.edu/index.htmlx
A global community of disability-related resources.
 
Exceptional Parent Magazine
http://www.eparent.com
A resource magazine dedicated to families with special needs children.
 
National Institutes of Health
www.nih.gov
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
www.nlm.nih.gov
World's largest medical library. Has an online catalog, databases, etc.
 
National Organization for Rare Diseases
www.rarediseases.org
National Organization of Rare Diseases offers database of rare conditions and resources.
 
MedicineNet
www.medicinenet.com
MedicineNet is a network offering health related information.
 
The National Information Center for Children and Youth with Disabilities (NICHCY)
www.nichcy.org
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.