New England Regional Genetics Network

Massachusetts Family Voices has partnered with the New England Region Genetics Network (NERGN) to help provide information to families of children with genetic conditions. The Federation is excited to welcome Karen Volle, Program Coordinator for NERGN, as a guest contributor to this Fall’s edition of NEWSLINE. Here, Karen shares an overview of her organization and its valuable resources.

– Pat Nemia, Project Director, Massachusetts Family Voices


By Karen Volle, Project Coordinator, New England Regional Genetics Network (NERGN)

Karen_VolleThe New England Regional Genetics Network (NERGN)is housed with the Institute on Disability at the University of New Hampshire. We are one of seven Regional Genetics Networks across the country, funded by the Health Resources and Services Administration (HRSA). Massachusets networks are made up of family/advocate organizations like Family Voices, genetic service and primary care providers, public health, telehealth specialists, and others interested in improving access to genetic services for individuals with genetic conditions.

In our region, we build partnerships, train & educate, as well as facilitate activities that will:

  • Link medically underserved populations to genetic services
  • Increase the use of telegenetics to enhance access to genetic services
  • Incorporate genetics into primary care practices
  • Provide technical assistance and resources to providers, public health, and families.

To check out those resources, please visit our website, (www.negenetics.org) specifically the Genetic Education Support System (GESS), our service resource map, and searchable library. Also, visit our recently updated Genetics Education Materials for School Success (GEMSS) website which now features a blue health care information button for health care providers for 37 genetic conditions.

Every Spring we host an Annual Meeting in Portsmouth and perhaps you’ll consider coming! Read about the Family Round Table and the Multi-Cultural Family Perspective, which were both very dynamic. If you’d like to learn more about upcoming events and receive our monthly newsletter, contact me at: karen.volle@unh.edu.


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