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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.
  • GEMSS is not intended to provide medical advice nor to aide in making a diagnosis. See full disclaimer.

NERGN 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.