GEMSS: Genetic Education Materials for School Success

If your child has a rare or complicated condition, you know how difficult it is to explain your child’s disease to each and every member of your child’s special education team. In order to simplify this process, the New England Genetics Collaborative, through a federal grant from the Health Resources and Services Administration (HRSA), has created a free website to provide helpful educational tools for parents and school teams of children with genetic conditions. Information about transitions for youth and young adults has also recently been added.


The website, located at, contains school-related information about a variety of genetic disorders, including general information about the condition, as well as specialized information related to the educational experience. For each condition, GEMSS includes the following sections:

  • Condition At a Glance
  • Meet a Child with the Condition
  • Medical / Dietary Needs
  • Education Supports
  • Behavior & Sensory Supports
  • Physical Activity, Trips, Events
  • School Absences & Fatigue
  • Emergency Planning
  • Resources

Each page can be printed individually, or a PDF of all the information may be printed as a packet. All information is copyrighted, but may be printed for individual and educational use.

The website currently features 35 conditions, as well as general strategies for children who may have undiagnosed medical or developmental conditions. Conditions range from common syndromes, such as Down syndrome and Cystic Fibrosis, to rare diseases like Aicardi syndrome and Kabuki syndrome. If your child’s condition is not listed, you may nominate it for future inclusion.

The packets serve as an excellent resource with just the right amount and type of information required by school districts, focusing first on potential issues in the classroom with links to learn more if desired. Parents may want to print the full PDF for their child’s condition and distribute it to members of the school staff. Teachers, aides, school nurses, and school case managers or counselors may also want to access the information to learn more about the conditions affecting children attending their school.

The information on GEMSS has been compiled using an extensive vetting process including geneticists/genetic counselors, educators, parents, and advocacy organizations.

You may visit the website at for additional information.

Author: Susan Agrawal • Date: 5/22/2014

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