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
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 Program’s 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
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

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