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 Diagnosis Library  

 

star4bullet  Websites 

Southeast Newborn Screening & Genetics Regional Collaborative (SERC): The SERC is a federally-funded initiative dedicated to improving the health and quality of life of individuals with heritable disorders.  Providing patients and families with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERC.

 

Genetic and Rare Conditions, University of Kansas Medical Center Alphabetized links to Information on genetic conditions and birth defects and links to support groups and clinics.

 

Genetic Alliance: It is a nonprofit health advocacy organization. In addition to information about genetics related organizations, the non profit also helps set up listservs and websites.

 

Clinical Trials: This is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.

 

Centers for Disease Control (CDC): A part of the U.S. Department of Health and Human Services, and is the primary Federal agency for conducting and supporting public health activities in the United States.

 

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Chromosome Disorder Outreach (CDO): This site is managed primarily by volunteer parents of children with rare chromosome disorders. It has an extensive library, detailed registry, newsletters, research opportunities, interaction with their medical advisory board, and a listserv for families.

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National Organization for Rare Disorders: NORD has patient assistance programs such as Medication Assistance, Disease Specific Programs and helps pay for travel and lodging for patients participating in clinical trials.

 

American Sign Language: This is a free online dictionary with over 7200 ASL signs as well as ASL for babies and conversational phrases.

 

star4bullet Fact Sheets

Genes and Chromosomes
Chromosome Analysis
Congenital Heart Defects
Seizure Disorder
Fragile X Syndrome
Cystic Fibrosis Carrier

 

star4bullet Guides for Families

Understanding Genetics
Handbook on Genetics

Genetic Terms and Definitions