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
Rare New England RNE offers patient and family support, highlights our region's medical and community resources, connects patients to appropriate national support and advocacy groups, and creates educational opportunities for New England patients and providers to advance care and quality of life for rare disorder patients and their families. Child, Teen/Young Adult, Adult Support & Advocacy
RI Office of Special Needs To achieve appropriate community-based systems of services for children and youth with special healthcare needs and their families. Child, Teen/Young Adult Public Health Departments
Smilow Cancer Genetics and Prevention, Yale The goals of the Smilow Cancer Genetics and Prevention Program are to provide a multidisciplinary, comprehensive approach to the care of patients at increased risk of cancer, to make new research advances in the field, and to improve awareness about cancer risk and prevention through education and community outreach. Locations in New Haven and Trumbull and Greenwich. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Society of Gynecologic Oncology (SGO) Genetics Toolkit A toolkit designed to provide critical, practical information to heath care provers interested in gaining a deeper understanding of the role of genetics in gynecologic cancers. Adult Genetic & Genomic Information
The Care Coordination Conundrum and Children and Youth with Special Health Care Needs Resource related to care coordination from the Catalyst Center Child, Teen/Young Adult Insurance & Financial, Medical Home & Care Coordination
The Feingold Center, the Cape Cod Hospital The Feingold Center for Children was established in 1984 to provide diagnosis and treatment to children born with birth defects, genetic diseases and intellectual disorders throughout the New England area. Child, Teen/Young Adult, Adult Genetic Clinic(s)
The Mighty News and stories about disability, disease and mental illness Child, Teen/Young Adult, Adult Support & Advocacy
The Spaulding Rehab Network, Pediatric Medical Clinics Diagnosis and counseling for pregnant women, newborns and children with known or suspected inherited diseases, especially congenital malformations and chromosomal disorders Child, Teen/Young Adult, Adult Genetic Clinic(s)
Transition to Adult Care Includes Clinician's Policy, Transition Toolkit, and resources for certain metabolic conditions Teen/Young Adult Transition
Transitioning - Teens to Young Adults Developed to help teenagers and young adults prepare for transitioning to the adult health care system, this includes an explanation for families, Transition Toolkit, and resources. Teen/Young Adult Transition