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
Genetics Education Materials for School Success GEMSS - Classroom strategies for 35+ genetic conditions; Sample paragraphs to insert into letter of medical necessity or letter to a school; brochure for your office or waiting room; training materials for higher ed classes; "Meet a Child" stories. Child, Teen/Young Adult Education, Insurance & Financial
Genetics Home Reference Genetics Home Reference provides consumer-friendly information about the effects of genetic variation on human health. Child, Teen/Young Adult, Adult Genetic & Genomic Information
Genetics in Primary Care - Webinars Excellent webinars developed by the AAP's "Genetics in Primary Care Institute" (scroll to topic 9) Child, Teen/Young Adult Education, Family Health History, Genetic & Genomic Information
GINA: NIH Fact Sheet Genetic Information Nondiscrimination Act Child, Teen/Young Adult, Adult Privacy Also by Genetic Alliance Child, Teen/Young Adult, Adult Privacy
Global Genes Global Genes® is one of the leading rare disease patient advocacy organizations in the world. It builds awareness, educates the global community, and provides critical connections and resources that equip advocates to become activists for their disease. Child, Teen/Young Adult, Adult Genetic & Genomic Information, Support & Advocacy
Got Transition Aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families Teen/Young Adult Transition
Hasbro Children's Hospital, Genetics and Dysmorphology The division of genetics treats patients of all ages. Newborn children are referred because of suspected birth defects, genetic disorders, congenital malformations and/or dysmorphic features. Older children are treated for the same problems, as well as for developmental delay. Persons of all age groups can be evaluated for connective tissue disorders, such as Marfan syndrome and Ehlers-Danlos syndrome. Other reasons for referral include osteogenesis imperfecta, chromosomal disorders, autism and neurofibromatosis. Genetic counseling and carrier testing are available for persons with family histories of cystic fibrosis, Duchenne muscular dystrophy and other genetic conditions. Child, Teen/Young Adult, Adult Genetic Clinic(s)
Health Care Transition for Adolescents and Young Adults This is an online one-hour CME (Continuing Medical Education) course on Six Core Elements of Health Care Transition. Sponsored by Health Services for Children with Special Needs, and National Alliance to Advance Adolesent Heatlh / Got Transition. Teen/Young Adult Transition
Hole in the Wall Gang Dedicated to providing “a different kind of healing” to seriously ill children and their families, free of charge. Child Support & Advocacy