INNOVATIVE GENETICS NAVIGATOR PROGRAM IN VIRGINIA

07/18/2023


In 2022, teams were formed by the NYMAC (New York, Mid Atlantic and Caribbean) Regional Genetics Center in each of their region’s states/territories to look at barriers faced by families seeking genetics testing such as limited genetic clinics, lack of genetic counselors and costs of genetic testing.  To meet Virginia’s needs, NYMAC’s Virginia team worked with the Center for Family Involvement (CFI) at Virginia’s UCEDD to launch a Genetics Navigator program. Through a network of 90 trained diverse, paid and volunteer family members across Virginia, the CFI has provided emotional, informational and systems navigational support to thousands of families each year whose children have developmental delays, disabilities and/or special health care needs.

The CFI collaborated with the Virginia Department of Health and NYMAC to simplify the genetics journey through providing one on one support to families by families of children with a genetic diagnosis.  
Genetic Navigators are not a replacement for an appointment with a genetic counselor or a geneticist. 

The CFI’s Genetic Navigators are parents, adoptive parents, and grandparents of children and adults who have a genetic condition. They have genetics systems training through NYMAC as well as their own unique experiences and expertise from navigating related services and systems in Virginia. The Genetic Navigator program is free of cost to families. Navigators are better prepared to help families who have a recent diagnosis or are seeing new behaviors that might align with their current genetic diagnosis.  They help families who are concerned about noticeable delays or ongoing medical conditions, recognize red flags that genetic testing might be necessary or discuss how to have conversations around genetic testing with their primary care physician.
 
To learn more contact Lisa Richard ([email protected]) or Jen Reese ([email protected]) or check out our page Center for Family Involvement - Virginia Commonwealth University (vcu.edu)