Genetic Syndromes & Disorders Links
National Organization for Rare Disorders
All types of genetic and rare disorders are covered: a short description and a list of additional resources. For the full report with clinical and experimental therapies and a longer description use the Medical Information Request form.
Genetic / Rare Disorder Support Group List
Long list of disorders arranged alphabetically. National & international groups; links for children & teens; Spanish language sites.
Genetics Education Center
Many links to information on all aspects of genetics and a tutorial on the basics of genetics. Created by the University of Kansas Medical Center for their students.
Genetics Home Resource
Created by the National Library of Medicine. Includes excellent explainations of genes and genetic inheritance, genetic disorders, testing and gene therapy. Has links to Parent Support sites, clinical trails and educational resources.
National Society of Genetic Counselors
Consumer information about genetic counseling, a family history tool, genetic discrimination resources and news.
Bioethics.net
Links to discussions about ethical questions on genetic research.
Sample books in the Family Health Library
- “Angelman Syndrome A to Z" (2nd ed) by Julie Hyman; Angelman Syndrome Foundation, 1999
- “Children With Fragile X Sydrome: A Parents’ Guide" by Jayne Weber; Woodbine House, 2000
- “Down Syndrome Nutrition Handbook; A Guide to Promoting Healthy Lifestyles” by Joan Medlen; Woodbine House, 2002
- “Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals” by Libby Kumin; Woodbiine House, 2003
- “Fetal Alcohol Syndrome: A Guide for Families and Communities” by Ann Streissguth; Paul H. Brookes Publ., 1997
- “A Parent’s Guide to Down Syndrome: Toward a Brighter Future” by Siegfried Pueschel; Paul H. Brookes Publ., 2001
