Resources for families on various genetics, telemedicine, emergency planning, and more topics.
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
This handout provides answers to frequently asked questions about a genetics visit and what to expect. Genetics Visit FAQ in English Genetics Visit FAQ in Spanish
This checklist helps families prepare for a telemedicine visit.
This handout provides answers to frequently asked questions about a genetics visit and what to expect. Genetics Visit FAQ in English Genetics Visit FAQ in Spanish
This is a guide to help you prepare for your telemedicine appointment with your provider. Your provider may have additional requirements for you that are not listed in the document. … More →
Overview of the concepts of genes and chromosomes, the basics of genetics. The video is in Spanish with English subtitles.
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 →
Dr. Kemper presents “Considering Newborn Screening for X-linked Adrenoleukodystrophy”
Dr. Kemper presents on the SACHDNC approach to considering conditions for newborn screening (NBS).
There are many different organizations and resources available to help families learn more about genetic disorders.
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.
SERN covers eight states in the southeastern region and each state has specific resources pertaining to newborn screening, genetics, family organizations, and professional organizations related to genetics.