The NERGN has endeavored to provide a limited number of resources for families, health care providers and public health professionals that are relevant to its mission. These resources take the form of definitions, publications, articles and links to other organizations, and are not intended to be a comprehensive listing. The intention is to provide useful information and to highlight some of the innovative thinking and approaches to care for individuals with inherited conditions. Providing resources to the audiences below fulfills part of the NERGN's purpose.

To view the resource you’re looking for, select the resource from the drop down menu below, then click “apply.”

Title Summary Age Group Topic
National Human Genomics Research Institute (NHGRI) Health section Detailed information about genetic disorders, background on genetic and genomic science, pharmacogenomics, family health history tool and online health, and Genetics and genomics information related to patient management, education, NIH and NHGRI research and ethical, legal and social issues resources. Child, Teen/Young Adult, Adult Genetic & Genomic Information
National Organization for Rare Disorders (NORD) NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Child, Teen/Young Adult, Adult Support & Advocacy
Navigating Insurance & Appeals Helpful information with respect to navigating the appeals process. Child, Teen/Young Adult, Adult Insurance & Financial, Medical Home & Care Coordination, Support & Advocacy, Transition
New England Connection for PKU and Allied Disorders NECPAD is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families. We hope you will find the information you are looking for. Please join our mailing list to stay up-to-date on activities, information and research. Contact us with any questions or suggestions. Child, Teen/Young Adult, Adult Support & Advocacy
New England Consortium of Metabolic Programs The New England Consortium of Metabolic Programs is an affiliation of healthcare providers, research scientists, and other health industry professionals collaborating to provide the best possible care and resources for patients with inborn metabolic disorders. Child, Teen/Young Adult, Adult Genetic & Genomic Information, Support & Advocacy, Transition
New England Critical Congenital Heart Disease Screening Project Processes for CCHD screening that set the stage for improved health outcomes for newborns with CCHD and their families. Child Critical Congenital Heart Disease
New England Regional Genetics Group The New England Regional Genetics Group was formed in order to serve as a consortium of genetics service providers, public health planners, consumer groups, and general and state maternal and child health personnel in New England. Child, Teen/Young Adult, Adult Education, Support & Advocacy
New Hampshire Family Voices  provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. Child, Teen/Young Adult, Adult Insurance & Financial, Support & Advocacy
New Hamshire Pediatric Improvement Partnership Quality Improvement in pediatrics Child, Teen/Young Adult Pediatric Improvement Programs
Newborn Screening Helpful information with respect to newborn screening. Child, Teen/Young Adult, Adult Newborn Screening

Pages