Did you know there is a network of people in New England all sharing the goal of improving the health and well-being of people with genetic conditions and their families? As partners with the New England Regional Genetics Network, or NERGN (formerly New England Genetics Collaborative), we encourage you to learn more about it!
NERGN is housed with the Institute on Disability at the University of New Hampshire. They are one of seven Regional Genetics Networks across the country, funded by the Health Resources and Services Administration (HRSA). The networks are made up of family/advocate organizations like Family Voices, genetic service and primary care providers, public health, telehealth specialists, and others interested in improving access to genetic services for individuals with genetic conditions.
In our region, they have built partnerships with Family to Family Health Information Centers in each of the New England States: NH Family Voices, Path Parent to Parent CT, Rhode Island Parent Information Network (RIPIN), Massachusetts Family Voices at the Federation for Children with Special Needs, Maine Parent Federation, and Vermont Family Network. This partnership ensures that the families and professionals we serve receive valuable information and resources about genetic services.
♥ Family members, school personnel, and health care providers may be interested in checking out NERGN sister site that addresses children and youth with genetic conditions in school settings. Genetic Education Materials for School Success (GEMSS) provides a wealth of practical knowledge for effectively integrating and supporting youth living with a genetic condition in a school environment.
Genetics Education Support System – this web-page provides a combination of genetics themed resources with the primary aim of supporting non-genetic medical providers as well as non-medical family support staff (family outreach, community health workers, social workers) with critical information on genetics resources (applicable tools, links for additional information, etc.) As a part of this, we’re also providing training on some of the essentials related to genetics services to groups across New England, upon request. Multiple helpful videos have already been posted, so be sure to check them out!
Web-Based Info and Resource Map – this resource helps family members and providers quickly identify contact information for regional family organizations, public health programs, as well as telemedicine and genetic services.
Genetic Alliance– The Genetic Alliance’s network includes more than 1,200 disease-specific advocacy organizations as well as approximately ten thousand universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools and innovative programs.
National Organization for Rare Disorders (NORD) – is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Know Your Genes is a public service provided by the Genetic Disease Foundation, a nonprofit foundation supporting research, education and the prevention of genetic diseases.
Genes in Life, developed by the Genetic Alliance, is a place to learn about all the ways genetics is a part of your life. On this site you will learn how genetics affects you and your family, why you should talk to your healthcare providers about genetics, how to get involved in genetics research, and much more!
New England Connection for PKU and Allied Disorders – is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families. We hope you will find the information you are looking for. Please join our mailing list to stay up-to-date on activities, information and research. Contact us with any questions or suggestions.
The New England Consortium of Metabolic Programs is an affiliation of healthcare providers, research scientists, and other health industry professionals collaborating to provide the best possible care and resources for patients with inborn metabolic disorders.
Rare New England 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.