New England Regional Genetics Network (NERGN)

The New England Regional Genetics Network (NERGN) was one of seven Regional Genetics Networks funded by Health Resources and Services Administration (HRSA) / Maternal and Child Health / Genetics Branch, grant no. UH7MC30778. 

NERGN encompassed Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont.

All of the Regional Genetic Networks shared the goal of improving access to quality genetic healthcare and creating a community for people with genetic conditions and their families. Sometimes those conditions are quite rare. The chance to connect with other people going through the same thing makes a profound difference, both for families and the health care providers caring for them.

The most well-received genetic resource developed and refined by NERGN over more than a decade was Genetic Education Materials for School Success (GEMSS). GEMSS was developed to help educators and school nurses with children who may have a genetic diagnosis. The final version, edited in 2024, includes “At a Glance” and “In-Depth” information. It is simple, practical, and well-vetted. GEMSS shows that all children can have positive experiences at school!

NOTE: GEMSS was transferred to National Family Voices / Genetics Resources in May 2024. 

History

Why did it start?

The effort to expand the delivery of genetic services has a long history in New England. For people with, or at risk for, genetic conditions, there are far too few health care providers with specialized knowledge, and the field of genetic medicine is complex and rapidly evolving. Back in 1977, a small group of leaders in the field assembled public health specialists, clinical geneticists, and family caregivers throughout New England. With the support of Maternal and Child Health program, they created New England Regional Genetics Group (NERGG). Through various iterations and a rebirth as the New England Genetics Collaborative (later to be called the New England Regional Genetics Network), this effort continued. Often, the same people were involved over time, bringing a nice continuity. 

It is worth noting that at the time this was written, NERGG – through sponsor funding – continues in their work to educate genetic providers and engage families and public health. We encourage you to visit the NERGG website.

Why did it end?

Although the Health Resources and Services Administration invested decades into building the genetic collaborations, they decided to go in a different direction when they released a new “blueprint for health” in 2024. They would still help families impacted by genetic conditions, but in a different way – through certain family organizations and the American Association for Pediatrics. 

NERGN Focus areas

• Strengthening family networks, especially for underserved communities
• Providing useful and needed resources
• Educating medical professionals, schools and the community
• Strengthening collaboration to improve access to genetic care, including telegenetics
• In the final year of funding, conducting a survey about newborn screening to assess needs after NERGN discontinued
• Engage non-genetics health professionals in training and education about genetics

Goals and Outcomes

Below are NERGN’s goals from HRSA and a summary of the outcomes.

1. Goal: Facilitate connections to genetic services for at least 2,000 individuals or families at risk for genetic conditions in New England.
   1. Outcome: NERGN met and exceeded this goal.
2. Goal: Increase the number of individuals who are medically underserved, with or at risk for genetic services, served by NERGN to at least 33%.
   1. Outcome: NERGN met and far-exceeded this goal.
3. Goal: Increase by 20% the number of health care providers receiving education.
   1. Outcome: NERGN met and exceeded this goal.
4. Goal: Increase by 20% the number of individuals with or at risk for genetic conditions, receiving genetic services through telemedicine visits.
   1. Outcome: NERGN did not meet this goal.
5. Goal: Increase by 20% the number of NERGN resources accessed.
   1. Outcome: NERGN did not meet this goal.