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
Maine Parent Federation A private non-profit organization, MPF provides information, referral, one on one telephone support, and training to parents of children with disabilities or special health care needs and the professionals who work with these families through numerous grant-funded projects. Our services are offered at no cost to parents and are available statewide. Child, Teen/Young Adult Support & Advocacy
Maine Quality Counts Pediatric Improvement Program Quality Improvement in pediatrics Child, Teen/Young Adult Pediatric Improvement Programs
MaineRare Maine Rare is a coalition of rare-disease stakeholders in Maine, united to improve the lives of the 1 in 10 Mainers with a rare disease. Child, Teen/Young Adult, Adult Support & Advocacy
Mass General Hospital for Children - Genetics Program The Genetics Program specializes in the evaluation and care of patients who may have health problems with a genetic or metabolic basis. These conditions can include the care of a newborn baby with a birth defect, a newborn with a metabolic condition detected by newborn screening, an older child with a developmental problem, a pregnant woman carrying a baby with a birth defect and suspected genetic condition, and an adult with a family history of an adult-onset genetic condition. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Mass. Health & Human Services CYSHCN Programs Offers a ranage of programming and assistance, including care coordination for Children with Special Heatlh Needs; Catastrophic Illness Relief Fund; Family TIES, Newborn and hearing screening, and more. Child, Teen/Young Adult Public Health Departments
Massachusetts General Hospital, Center for Cancer Risk Assessment This center helps to identify families that may have a hereditary cancer syndrome and, when indicated, provides genetic testing, screening and support. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Medical Home Portal Reliable information and resources to help physicians and parents care for children and youth with special health care needs (CYSHCN). Child, Teen/Young Adult, Adult Medical Home & Care Coordination
Moving Forward, Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI) Most women with galactosemia will face primary ovarian insufficiency (POI) at some point in their lives. This guide is designed to help you better understand what POI means and learn ways that you can cope with it. Genetic & Genomic Information, Transition
Moving on with Mito A Guide for Teens and Young Adults Living with Mitochondrial Disorders Teen/Young Adult Insurance & Financial, Transition
National Center for Family/Professional Partnerships  Providing leadership in helping families of children and youth with special health care needs / disabilities and professionals partner to improve care. Child, Teen/Young Adult, Adult Support & Advocacy

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