Resources for Families

Short introduction here. (Who will find this page helpful? What will they find here?)

New Resources


Emergency Preparedness Resources for Patients and Genetic Providers

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

Genetics Visit FAQs

This handout provides answers to frequently asked questions about a genetics visit and what to expect.

Preparing for a Successful Telehealth Visit Checklist

This checklist helps families prepare for a telemedicine visit.

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Recursos en Español


Intro paragraph here in Spanish!

Popular Videos


A Miraculous New Era for Cystic Fibrosis: Impact of Molecular Screening and Therapy.

The third annual Paul M. Fernhoff Memorial Lecture was held Thursday, September 17, 2015. Dr. Philip Farrell’s keynote address is available here entitled “A Miraculous New Era for Cystic Fibrosis: … More →

Clinical Genetic Assessment of the Etiology of Autism

On August 8, 2009, Dr. G. Bradley Schaefer of the University of Arkansas for Medical Sciences presented “Clinical Genetic Assessment of the Etiology of Autism” at the Southeastern Regional Genetics … More →

Clinical Whole Exome Sequencing For the Evaluation of Genetic Disorders

Dr. Eng presents on whole exome sequencing.

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Nutrition Management Guidelines


SERN and Genetic Metabolic Dietitians International (GMDI) are collaborating to develop Nutrition Management Guidelines for inherited metabolic disorders. The guidelines are based on review of scientific evidence and expert consensus and aim to foster optimum nutrition management of affected individuals, reduce the uncertainty and variability in management, and direct future research.

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Resources by State


Many services are state specific….(intro). Be sure to check out what’s available in your state!

State Resources