Education & Outreach: Products

Education & Outreach Products

Genetics Education Materials for School Success (GEMSS)

gemss homepage imageVisit the website: We are continually improving this website, so we invite feedback! 

GEMSS was created for teachers, therapists, counselors, parents and schools so they can best support students with genetic conditions.  This new website is unique; it houses a library of useful tools and tips for educational and classroom support, dietary needs, field trips, sports and much more, all in one place.

The aim of GEMSS is to make school a successful and positive experience for all students who have genetic conditions. As of January 2015, the website includes information on supporting students with:

  • 22q Deletion
  • Achondroplasia
  • Aicardi Syndrome
  • Angelman Syndrome
  • Autism Spectrum Disorder
  • CHARGE Syndrome
  • Congenital Heart Defects
  • Cornelia de Lange Syndrome
  • Cystic Fibrosis
  • Down Syndrome
  • Eherls-Danlos Syndrome
  • Fetal Alcohol Spectrum Disorders
  • Fragile X
  • Galactosemia
  • Kabuki Syndrome
  • Klinefelter Syndrome
  • Marfan Syndrome
  • MCAD
  • MECP2 Duplication
  • Neurofibromatosis 1 
  • Neuromuscular Disorders
  • Noonan Syndrome
  • PKU
  • Prader-Willi Syndrome 
  • Rett / Rett varian Syndrome
  • Rubinstein-Taybi Syndrome
  • Russell-Silver Syndrome
  • Sickle Cell Disease
  • Smith-Magenis Syndrome
  • Sotos
  • Tuberous Sclerosis
  • Turner Syndrome
  • Urea Cycle Disorders
  • Williams Syndrome
  • Undiagnosed/Other

More conditions will be added in the future. Before developing the website, the work group conducted focus groups in elementary schools across New England to vet the project. Read the full report.

GEMSS Learning Module

GEMSS Learning Module - Training Materials for Your Higher Education Class

The Learning Module for Genetics Education Materials for School Success (GEMSS) was developed to use in education and other departments at the community college, college, or university level.  Our hope is to reach teachers and others before they graduate. It is suitable for other learning environments as well. Like all of our materials, these are free resources. 

The Learning Module has suggested activities - choose one or all:

  • Pre-work for students
  • 2 minute video
  • In or out-of-class assignments (works well online)
  • Slide presentation for whole group activity 
  • Independent or small group activity 
  • Discussion questions to encourage critical thinking about inclusion for children who have genetic conditions
"Finding the GEMSS in Your School", Exceptional Parent Magazine

"Finding the GEMSS in Your School", written by Ann Donaghue Dillon, was published in the March 2014 issue of Exceptional Parent magazine. This was a collaborative effort with the Genetic Alliance, a regular contributor to the magazine. 

If you are like me, I always had my eyes and ears open to learn about any information to help my daughter receive a good education! Having a genetic condition that was both rare and new for her school, she made all of us on the team try our best and then hope! I wish GEMSS was available when she was starting out in school! It would have been a great source of information that we could have used as a foundation, and then branched out as needed! – Ann Donoghue Dillon

Newborn Screening Brochures in Multiple Languages

The following brochures developed by New England Public Health Genetics Education Collaborative (NEPHGEC), give the reader an overview of the newborn screening process and the genetic conditions for which the panel screens, available in multiple languages. Click on the links below to download the PDFs.

NE Genetics Resources Directory

The New England Genetics Resources Directory lists service information in New England. Key sections are translated into Spanish for online posting.

Understanding Genetics Guide for Patients and Professionals

Understanding Genetics: Guide for Patients and Professionals was published for New England in 2007.