Rare Disorders

February 2011 Alone we are rare. Together we are strong." Slogan of Rare Disease Day ---February 29, 2012. Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially medicine, can also be a challenge---and for the same reason. Rareness. If you have a rare disease, know someone who … [Read more...]

Understanding genetics

Understanding Genetics is a resource of the Genetic Alliance. It begins with a basic introduction to genetics concepts, followed by detailed information on topics such as diagnosis of genetic conditions, family history, newborn screening, genetic counseling, understanding patient stories, and ethical, legal, and social issues in genetics. http://www.geneticalliance.org/understanding.genetics … [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...]

GEMSS: Genetic resources for educators

Approximately 1 in every 20 children nationwide has a genetic or metabolic condition like Down syndrome, fragile X syndrome, sickle cell disease, or Phenylketonuria (PKU). The Genetics Education Materials for School Success (GEMSS) website provides educators, other school personnel, and parents with a “one-stop shop” of useful tools and tips for support of students with genetic conditions throughout the school day. Each condition and its symptoms … [Read more...]

Taking a genetic view of ADHD

Over the last 15 years, Professor Thapar and colleagues have been building evidence to show that ADHD has genetic links. Now, by looking across the genomes of children with ADHD, they have uncovered direct evidence of a genetic contribution to the disorder.  (posted August 10, 2012) http://www.brainfacts.org/diseases-disorders/childhood-disorders/articles/2012/taking-a-genetic-view-of-adhd/  … [Read more...]

NOTICE: The National Dissemination Center for Children with Disabilities (NICHCY) is no longer in operation. Our funding from the U.S. Department of Education’s Office of Special Education Programs (OSEP) ended on September 30, 2013. Our website and all its free resources will remain available until September 30, 2014.