Genomic Tools: Chromosomal Microarray

Family Resources

GENERAL INFORMATION
Unique: Understanding chromosome disorders (http://www.rarechromo.org/) - A group designed to provide information and support to those who are caring for individuals with rare chromosome differences. Some general resources include: Microarray (aCGH) Genetic Tests: If your child has had a genetic test called a microarray, this leaflet will help you understand why that test was performed and how the test works. The Little Yellow Book: This booklet provides a basic understanding of chromosomes and rare chromosome disorders and provides information about Unique. The booklet is available in English, Spanish, Italian, Norwegian and Finnish

Genetics Home Reference (http://ghr.nlm.nih.gov/) - A resource from the National Institutes of Health
that provides information about genetic conditions generally and also condition specific information. Genetic Alliance (www.geneticalliance.org) - A health advocacy organization that is committed to transforming health through genetics. GA has developed a number of resources and repositories for information on genetic conditions including: Disease Infosearch (www.diseaseinfosearch.org): The site's goal is to serve as a credible resource for people to learn more about the signs and symptoms of conditions, the latest research, and how to access support. GenesInLife (genesinlife.org): a place to learn about all the ways genetics is a part of your life Talking glossary of Genetics (www.genome.gov/glossary) - A glossary designed to help learners at any level better understand genetic terms as explained by scientists at the NIH CMA video (https://prenatal.patientcrossroads.org/videos/MicroarrayVideo/story.html) - A short video developed as a part of an online community as part of the Prenatal Microarray Follow-Up-Study funded by the National Institute of Health (NIH) National Institute of Child Health and Human Development (NICHD). Provides an overview of the history and use of chromosomal microarray.

CONDITION-SPECIFIC INFORMATION
Unique: Understanding chromosome disorders (http://rarechromo.org/forum/DisordersLeaflets.asp)Unique has developed family-friendly pamphlets for specific CNVs in a way that is meant to be easy to understand. It also explains some basic genetics concepts. Very reader friendly! Genetics Home Reference (http://ghr.nlm.nih.gov/condition/16p112-deletion-syndrome)- Provides information about known deletion and duplication syndromes, some of which can be detected by CMA. This would be best for parents who are more familiar with genetics or who are interested in building a stronger medical background. Genetic Education Materials for School Success (GEMSS) (gemssforschools.org) - provides information about medical/dietary needs, education supports, behavior & sensory support, physical activity & trips & events, school absences & fatigue, emergency planning, and resources for a select number of genetic conditions

Published August 2013 NCHPEG All rights reserved