Work Groups

Dissemination, Education and Marketing Products

• Genetics Education Materials for School Success (GEMSS)

  Visit the website: www.gemssforschools.org. This is a work in progress and we invite feedback! Please consider completing the survey found on the site.

  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. The website includes information on supporting students with:

  • 22q Deletion
  • Down Syndrome
  • Fragile X
  • MCAD
  • PKU
  • Sickle Cell Disease
  • VLCAD
  • Williams Syndrome
  • Undiagnosed/Other

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

• 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.

  •  Arabic
  •  Bosnian
  •  Chinese (Simplified)
  •  Chinese (Traditional)
  •  English
  •  French
  •  Haitian
  •  Italian
  •  Khmer
  •  Lao
  •  Polish
  •  Portuguese
  •  Russian
  •  Somali
  •  Spanish
  •  Vietnamese

• Family Health History Awareness

   link  This slide presentation was developed by the NEGC Dissemination, Education and Marketing (DEM) Work Group. This includes a comprehensive slide library and training/public awareness modules to meet the needs of varied target audiences (e.g. general public, nurses, social workers, public health professionals, students). The new modules were field-tested and were made available in April 2009.

• NE Genetics Resources Directory

  link  The directory lists service information and key sections are translated into Spanish for online posting.

• Understanding Genetics Guide for Patients and Professionals

  link A New England Guide for Patients and Health Care Professionals (PDF) 2007.