New England Genetics Collaborative

The mission of the New England Genetics Collaborative (NEGC) 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.

NH Family Voices is a member of the Advisory Committee and participates on the Health Care Access Financing (HAF) Workgroup whose overarching goal is to improve healthcare insurance coverage for individuals with genetic conditions.

In December 2012, the workgroup began to gather information in order to better understand, from the perspective of families of children with genetic conditions, the gaps in coverage of essential services The HAF Workgroup designed and disseminated a survey through Family Voices/Parent Information Centers and condition-specific organizations within the New England region. The services referred to the Essential Health Benefits (EHBs) outlined in the Affordable
Care Act (ACA).

In 2013-2014, the HAF Workgroup developed a regional policy brief presenting data from this survey and quotes from families, including information on current out-of-pocket costs, the impact of coverage issues on health and wellbeing, access issues, and the administrative burden of negotiating with insurance and/or Medicaid systems. The following is an excerpt from the policy brief’s executive summary:

“Children with genetic disorders experience gaps in insurance coverage and benefits that put their health and well-being in jeopardy and their families at risk for overwhelming medical debt. Readers are encouraged to learn about some of the strengths and limitations of current health insurance policy as it relates to children with genetic disorders, as well as the multiple opportunities available to improve coverage and care for children with genetic disorders while reducing long term physical, social, and financial costs.”

In 2015-2016 a second survey conducted and sent to families in New  England who have children with genetic conditions. The goal was to gain a better understanding of issues related to health care access and coverage/reimbursement for this population. The results of that survey are presented in the fact sheet “Promoting and Improving the Health and Well-Being of People with Inherited Conditions.”




New England Genetics Collaborative

GEMSS – Genetics Education Materials for School Success

Genetic Alliance

National Organization for Rare Disorders (NORD)

An Educator’s Guide to MCADD

An Educator’s Guide to PKU

An Educator’s Guide to Urea Cycle Disorders