"All individuals with genetic conditions in New England have the opportunity to achieve their fullest potential."
The mission of the New England Regional Genetics Network (NERGN) is to promote and improve health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut.
To achieve this, the NERGN will take on multiple support roles in order to enhance existing health infrastructures and related services for individuals in the New England region living with a genetic condition, with a particular emphasis on medically underserved populations. For 2017/2018, the focus of our support efforts will be on primary care providers, genetic counselors, and outreach workers who help to bridge the gap between communities in need and local health care facilities. Supports can include:
- A range of genetics-informed educational resources and supports, this will range from:
- a broad array of timely informational resources for anyone wanting to learn more about genetics or how to better support someone with a genetic condition, including accessible maps detailing critical genetics related resources on the NERGN home page; to…
- additional tools and guidance tailored for health- and non-health providers on how to integrate a range of available genetics information into their day to day work; to…
- a series of online sessions for primary care providers to share and learn from their experiences serving children with complex medical needs
- Technical assistance: addresses areas such as how to adapt telehealth processes into clinical workflow at primary care practices, equipment training for genetic counselors, best practices in reimbursement for telehealth, and identifying funding sources to launch telehealth infrastructures
- Clinical supports: providing genetic specialist clinical consultations to primary care providers needing enhanced information on how to best support their patient with a genetic condition.
The purpose of all seven Regional Genetics Networks (RGNs) across the country is to: 1) link medically underserved populations (based on poverty, rural geographic location, and/or populations that experience health disparities)1 to genetic services; 2) implement quality improvement activities to increase the connection with genetic services for the medically underserved; 3) implement evidence-based innovative models of telehealth and/or telemedicine with a focus on clinical genetics outreach; and 4) provide resources to genetic service providers, public health officials and families.
- New England Regional Genetics Network (NERGN)
- New York-Mid Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC)
- Southeast Regional Genetics Network (SERN)
- Midwest Genetics Network
- Heartland Genetics and Newborn Screening Collaborative
- Mountain States Regional Genetics Network (MSRGN)
- Western States Regional Genetics Networks (WSRGN)