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Thank you for visiting the GEMSS website. As of June 1, 2017, the funding priorities of the Health Resources & Services Administration (HRSA) for the Regional Genetics Networks have changed; content will no longer be added or updated until further notice.

GEMSS was developed by the New England Genetics Collaborative (NEGC), which became the New England Regional Genetics Network (NERGN) in June, 2017. 

  • Our goal is to promote awareness of and education about genetic conditions.  
  • Contributors to GEMSS come from clinical, public health, advocacy, and academic settings. All content has been vetted by family experts. 
  • Before developing GEMSS, we conducted focus groups in three elementary school settings to get feedback about the usefulness of a website like GEMSS. Read more. 
  • GEMSS was launched in 2012 with seven conditions. There are now 37 conditions and a section for undiagnosed disorders, as well as numerous enhancements.
  • On May 31, 2017, the funding for GEMSS was cut and the site will not have the on-going attention of a geneticist, genetic counselor, or family member. The site has been so helpful to many people across the country and around the world and it will be maintained at a more minimal degree. 
  • GEMSS is not intended to provide medical advice nor to aide in making a diagnosis. See full disclaimer.

NEGN is funded by Cooperative Agreement No. UH7MC30778 between the University of New Hampshire and the Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch.  

We invite you to contact the New England Regional Genetics Network (NERGN) at, if you have comments or questions.