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 |
|---|---|---|---|
| Know Your Genes | Know Your Genes is a public service provided by the Genetic Disease Foundation, a 501(c)(3) nonprofit foundation supporting research, education and the prevention of genetic diseases. | Child, Teen/Young Adult, Adult | Family Health History, Genetic & Genomic Information, Genetic Testing |
| Lahey Hostpital and Med Center, Familial Cancer Risk Assessment Center | The Familial Cancer Risk Assessment Center at Lahey Clinic was created to provide comprehensive risk assessment and management recommendations to individuals with significant personal and/or family histories of cancer. | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |
| Letters of Medical Necessity | Helpful information with respect to writing letters of medical necessity. | Child, Teen/Young Adult | Education, Insurance & Financial |
| Lifespan Cancer Institute, Cancer Genetics Program | The Cancer Genetics Program provides counseling and testing for people who may be at risk for a hereditary cancer syndrome. Locations in Providence (2), Newport, and Greenwich. | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |
| Lifespan, Cardiovascular Genetics Clinic | The Cardiovascular Genetics Clinic offers evaluation and genetic counseling for cardiac conditions. Locations in Providence and Newport. | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |
| Love That Max | A Blog about Kids with Special Needs who Kick Butt | Child | Support & Advocacy |
| MA Federation for Children with Special Needs | provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. | Child, Teen/Young Adult | Support & Advocacy |
| Maine Genetics Program - Department of Health & Human Services | Located within the Maine Department of public health, this program oversees the activities of the Maine Newborn Bloodspot Screening Program. Services included are: risk assessment, genetic counseling, care coordination, referral, and education & training to professionals regarding genetics. | Child, Teen/Young Adult, Adult | Public Health Departments |
| Maine Medical Center / Cancer Risk & Prevention Clinic | The experts at the clinic help patients and their families understand how their genes may affect their risk for cancer and how they can manage this risk. | Adult | Genetic Clinic(s) |
| Maine Medical Center, Maine Pediatric Specialty Group | Provide adult genetics, pediatric genetics | Child, Teen/Young Adult, Adult | Genetic Clinic(s) |