Genetic Resources

“All individuals with genetic conditions in New England have the opportunity to achieve their fullest potential.”

 

 

The New England Regional Genetics Network (NERGN) aims to improve health equity and outcomes in individuals with genetic conditions; reduce morbidity and mortality caused by genetic conditions (including congenital and metabolic disorders); and to improve the quality of coordinated and comprehensive genetic services to children and their families.

Mission

NERGN will 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.

NERGN has recognized PATH Parent to Parent/Family Voices of CT as the CT family support leader to provide supports to assist in bridging the gap between communities in need. Supports can include:

1.  A range of genetics-informed educational resources and supports, this will range from:

1. 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

2. 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

3. a series of online sessions for primary care providers to share and learn from their experiences serving children with complex medical needs

  1. 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
  2. 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

For more information please visit:

 

www.negenetics.org      www.gemssforschools.org