NORD is an organization that provides resources for patients and families with rare disorders. Here you can find webinars, educational resources, a list of rare disorders, and other materials to assist with learning more about rare disorders.
GARD knows that understanding medical terms and technology related to a genetic disorder can be difficult. The Center has developed a glossary of medical terms to help patients and their families understand the language used.
Dr. Dave is currently the Associate Professor, Division of General Medicine and Clinical Epidemiology and the Associate Director for the Center for Health Equity Research at the University of North … More →
Provides information on disorders screened via the newborn screening program. These fact sheets were developed for families who want to learn more about a disorder.
Included in this document are disorder-specific lists of supplies needed in case of emergency, as well as a general list of basic emergency preparedness supplies.
HRSA is accepting applications for the FY 2021 Sickle Cell Disease Treatment Demonstration Program.
The Health Resources and Services Administration (HRSA) is accepting applications for the fiscal year (FY) 2021 State Newborn Screening Interoperability Implementation Program.
Webinar RecordingWebinar Slide Presentation Telegenetics and Telehealth Resources
The Health Resources and Services Administration (HRSA) is accepting applications for the fiscal year (FY) 2021 Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions Program.
Currently screens for 54 conditions in the following categories: amino acids, endocrine, fatty acid oxidation, hemoglobin, organic acid, and other disorders/conditions
Currently screens for 46 conditions in the following categories: amino acids, endocrine, fatty acid oxidation, hemoglobin, organic acid, and other disorders/conditions
The Early Hearing Detection and Intervention (EHDI) Program that screens and provides treatment for infants diagnosed with a hearing condition
A federally funded program to provide low-income women, infants, and children up to the age of 5 with supplemental nutrition
The National Coordinating Center has consolidated a list of resources developed by the various Regional Genetic Networks, Telehealth Resource Centers, the Centers for Disease Control and Prevention, and Family Voices
Following the onset of the COVID-19 pandemic, this fact sheet was developed to provide patients with a list of contact information from metabolic formula companies and family organizations in the metabolic community.
Provide patients with information on what to expect during your telehealth visit
Provides free training courses related to different topics in telemedicine. Example of courses offered is Telehealth 101: A Quick Start Guide, Telehealth Coordinator Series.
A PDF compiled by Michael Edwards, PhD, Northeast Telehealth Resource Center, January 28, 2021.
Telegenetics training is available for genetic counselors and medical geneticists. Interested individuals must request training on the Heartland website.
This infographic provides in-depth information to families about telegenetics.