Educational Resources
RNE recognizes the many challenges for patients, families and school systems to meet educational needs for students in the rare disease community. There are several helpful resources available to ease burden through offering information, providing law summaries (ie. ADA, IDEA, etc), and by offering insight on manifestations of disease and how this might interfere with regular classroom organization - and how to accommodate to most benefit the student. 

GEMSS - Genetics Education Materials for School Success -
"The aim of GEMSS is to assure all children with genetic health conditions succeed in school-life".

"GEMSS was developed by the New England Genetics Collaborative (NEGC), which became the New England Regional Genetics Network (NERGN)", a program administered by the Institute on Disability at the University of New Hampshire.

Within the GEMSS website, information can be found for Schools, Families and Health Care Providers; this includes a module for integrating curriculum into higher educational programs.


GEMSS offers information to better understand genetic conditions and the needs of students who have genetic conditions and offers helpful strategies for use in schools.

Teaching with GEMSS - Higher Ed Module
Ideas for staff development, college courses (nursing, education, related services, etc.)


GEMSS provides a family-friendly starting point to help family members learn more about genetic conditions and offer ideas to encourage inclusion and participation in the classroom.

Healthcare Providers

GEMSS is a useful resource for coaching parents about school issues, advising about medical needs in schools, and providing a base of knowledge from which to build a healthcare plan for school use.