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 |
|---|---|---|---|
| Newborn Screening | Helpful information with respect to newborn screening. | Child, Teen/Young Adult, Adult | Newborn Screening |
| Newton-Wellesley Hospital, Prenatal Genetics, Diagnosis and Counseling | The Center for Fetal Medicine and Prenatal Genetics includes high-risk obstetricians, geneticists, radiologists, genetic counselors and nurses who provide assessment and counseling services before, during, and after pregnancy. | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |
| NH Title V Programs Services for Children with Special Health Care Needs | administers health programs and services for children ages' birth to 21 years, who have, or are at risk for, a chronic medical condition, disability or special health care need | Child, Teen/Young Adult | Public Health Departments |
| Norwalk Hospital, Antenatal Testing Center | Cancer genetic counseling/risk assessment; Prenatal diagnosis | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |
| Parent to Parent USA | Committed to promoting access, quality and leadership in parent to parent support across the country. | Child, Teen/Young Adult | Support & Advocacy |
| Parents Available to Help (PATH) / Parent to Parent & Family Voices of Connecticut | a network of families providing informational and emotional support to others who have a child with developmental or health related needs. | Child, Teen/Young Adult | Support & Advocacy |
| Pediatric to Adult Care Transition Toolkit | Facilitates more effective transition and transfer of young adults from pediatric to adult care, with a major focus on providing a framework for the adult care clinicians. It was developed by the American College of Physicians (ACP) and Got Transition. | Teen/Young Adult | Transition |
| PKU Primer | For Health Care Providers Treating Adolescents and Adults with PKU | Teen/Young Adult | Education |
| PKU Toolkit | Designed to be a personal guide for teens and young adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues | Teen/Young Adult | Transition |
| Promoting and Improving the Health and Well-Being of People with Inherited Conditions | Summary of results of a survey conducted by the NEGC Healthcare Access & Financing work group | Child | Insurance & Financial |