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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 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:
    • 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
    • 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
    • A series of online sessions for primary care providers to share and learn from their experiences serving children with complex medical needs
  2. 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
  3. 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

A Few Things to Know about Your Child’s Visit to the Genetics Clinic

Read the full brochure here.

If you live outside of Connecticut, but still in New England, you can find your family support organization here.

For more information please visit:

NERGN

Visit NERGN

GEMSS

Visit GEMSS

PATH's Genetics Video Library

PATH’s videos are viewable directly from our website with close-captioning available. They can also be viewed directly from YouTube using the link on the videos below. Subscribe to PATH’s YouTube Channel to receive updates when our newest videos are uploaded.

Genetics 101

Genetic Conditions

Fragile X

Angelman Syndrome

Spinal Muscular Atrophy

Neurofibromatosis

Cerebral Palsy

Learning about Type 1 Diabetes

Diabetes

Congenital Heart Defects

Autism

Learning more about Genetic Conditions: Common Questions for a Genetics Counselor

Phenylketonuria (PKU)

Prader-Willi Syndrome

Down Syndrome

Alagille Syndrome

Williams Syndrome