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
A Guide for Prenatal Educators This booklet is designed to make it easy for you, a prenatal educator, to effectively inform expectant parents about newborn screening. Adult Newborn Screening
Affordable Care Act On October 1, 2013, Health Insurance Marketplaces opened in every state, and millions of Americans became eligible to apply for coverage. The NEGN would like to help families and communities to understand the law and to access the related resources. Links for enrolling into health insurance, details on the affordable care act, medicaid, and information on professionals can be found here. Child, Teen/Young Adult, Adult Affordable Care Act
An Educator's Guide to MCADD Topics covered: - What is MCADD? - Symptoms and Treatment - The Latest Research on MCADD - How Can Teachers Help? - Tips to Remember - Resources & Notes Child Education
An Educator's Guide to Urea Cycle Disorders Teachers, nurses, and parents of students who have urea cycle disorders, you asked for information to help your students thrive, and we answered — this guide is for you! Child Education
Appeals Helpful information with respect to navigating the appeals process. Child, Teen/Young Adult, Adult Insurance & Financial, Medical Home & Care Coordination, Support & Advocacy, Transition
Baystate, Family Cancer Risk Program The Family Cancer Risk Program provides patients with a coordinated, multifaceted team to guide them through every step. Their goal is to provide the right test, to the right person, at the right time. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Baystate, Pediatric Genetics Baystate pediatric specialists provide comprehensive, compassionate genetics services for children and families, including: Genetic counseling Genetic assessments Genetic testing Ongoing patient and family care coordination Metabolic disorders clinic Prenatal and postnatal evaluation and diagnosis Risk assessment Treatment Child, Teen/Young Adult, Adult Genetic Clinic(s)
Baystate, Prenatal Genetics The Family Cancer Risk Program provides patients with a coordinated, multifaceted team to guide them through every step. Their goal is to provide the right test, to the right person, at the right time. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Beth Israel Deconess Medical Center, Prenatal Genetics Program Comprehensive perinatal genetic counseling regarding risks associated with family history, abnormal tests and screenings, and advanced maternal age. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Boston Medical Center, Cancer Genetics Consultation and testing for cancer predisposition syndromes for people who have a strong personal or family history of certain types of cancer. Child, Teen/Young Adult, Adult Genetic Clinic(s)

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