Rare Disorders

_________________________________Alert! Alert! Because NICHCY’s website will only remain online until September 30, 2014, most of its rich content has moved to a new home, the Center for Parent Information and Resources (CPIR), where it can be kept up to date. The new address of the Rare Disorders fact sheet at the CPIR is:http://www.parentcenterhub.org/repository/raredisorders/_________________________________ February 2011Alone we are rare. … [Read more...]

Students Living With a Genetic Condition: A Guide for Parents

You know how to identify and manage symptoms at home, and it may be scary to have someone else manage your child’s medical care in your absence. This guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. This may also be a useful resource for bus drivers, babysitters, church leaders, or any other potential caregiver. http://tinyurl.com/23neulr … [Read more...]

GINA–the law against genetic discrimination

With genetic testing becoming increasingly pervasive in medical care and our daily lives, three of the most prominent organizations in genetics (the Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education in Genetics, and Genetic Alliance) have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA), a landmark federal law that protects individuals … [Read more...]

Learning about an undiagnosed condition in a child

Many disabilities and disorders go undiagnosed, even after extensive evaluation and medical testing. If this is your situation, you may want to read this article from the Human Genome Project.http://www.genome.gov/17515951 … [Read more...]

NOTICE: NICHCY is going away, but its resources are not. Find hundreds of legacy NICHCY publications, as well as our training curriculum on IDEA 2004, in the Center for Parent Information and Resources' Library at http://www.parentcenterhub.org/resources. This website will remain available until September 30, 2014. After that date, web visitors will be automatically redirected to http://www.parentcenterhub.org.