Have you heard about the Virginia Genetic Navigator Program?
As part of our efforts to understand and address barriers that families face in accessing needed genetic services in Virginia, the NYMAC Virginia Team collaborated with the Center for Family Involvement (CFI) at Virginia Commonwealth University to launch a Genetics Navigator program to support families across Virginia.
This FREE program aims to help families of children or adults with disabilities or special health care needs more easily access and navigate genetic services. CFI’s Genetic Navigators have genetics systems training through NYMAC as well as expertise in navigating related services and systems in VA.
Most importantly, these Genetic Navigators are parents of children with genetic diagnoses and have their own personal experiences using genetic services. They are prepared to simplify the genetics journey by providing one on one support to families.
The Genetics Navigator program was developed through a joint effort between the Virginia Department of Health, the Center for Family Involvement at VCU and the NYMAC Regional Genetics Network. Please click on the links below for more information on this service. To get in touch with a Genetics Navigator, please leave a message at (877) 567-1122 or email cfihelpline@vcu.edu .
Resources for Children and Families with Genetic Conditions in VA:
Center for Family Involvement: The Center for Family Involvement works with families to increase their skills as advocates, mentors and leaders so that families, children and young adults with disabilities can lead the lives they want. www.centerforfamilyinvolvement.org
- Genetic Navigator Program of Virginia
- Blog: Finding your way in a diagnostic odyssey
- Podcast: The Odyssey Podcast: The Odyssey – Spotlight on Rare Disease
Family to Family Network of Virginia (F2F): six regional office Family to Family Network where family members of culturally and linguistically diverse children and adults with disabilities (of all ages) have people in their own communities to call upon in their efforts to identify and obtain needed information, services and community supports. FAMILY TO FAMILY NETWORK – Center For Family Involvement (centerforfamilyinvolvementblog.org)
VA Department of Health (DOH): The Mission of the Virginia Department of Health is to protect the health and promote the well-being of all people in Virginia. The agency’s vision statement is “Become the healthiest state in the nation.”. Virginia Department of Health
VA Early Hearing Detection and Intervention (EDHI): The goal of the Virginia Early Hearing Detection and Intervention program is to identify congenital hearing loss in children before three months of age and to assure enrollment in intervention services before six months of age. The Virginia Early Hearing Detection and Intervention Program provides information and referral to families regarding newborn hearing screening, follow-up testing, and early intervention services. Early Hearing Detection – Virginia Department of Health – LiveWell
Virginia Newborn Screening Program is composed of several service-programs including Dried Blood Spot Testing, Critical Congenital Heart Disease, Early Hearing Detection and Intervention, and VaCARES Birth Defects Surveillance. Every infant born in Virginia will receive testing, appropriate follow-up, and referrals as needed by VDH central office staff and partners to assist achieving optimal health through early diagnosis and treatment. Virginia Newborn Screening Program – Virginia Department of Health – VDHLiveWell
VA Care Connection for Children: is a statewide network of centers of excellence for children and youth with special health care needs (CYSHCN) that provide leadership in the enhancement of specialty medical services; care coordination; medical insurance benefits evaluation and coordination; management of the CYSHCN Pool of Funds; information and referral to CYSHCN resources; family-to-family support; and training and consultation with community providers on CYSHCN issues. Care Connection for Children – Virginia Department of Health – VDHLiveWell
VA Metabolic Formula and Food Program: The Virginia Department of Health’s Metabolic Formula Distribution and Purchase Plan provides metabolic formula to Virginia residents who meet financial and medical eligibility criteria. Metabolic Formula and Food Program – Care Connection for Children (virginia.gov)
VA Child Development Services: A professional team consisting of a pediatrician, nurse, social worker, educational consultant, and psychologist provides services. Core services include diagnostic assessment and care planning, follow-up care coordination and referral. Consultations are available from other pediatric specialists as needed. Child Development Services – Virginia Department of Health – VDHLiveWell
VA Early Intervention: site provides information, resources and a broad range of professional development efforts specifically designed for early interventionists, students, families, faculty and all committed to ongoing learning.https://veipd.org/main/index.html
Infant & Toddler Connection of Virginia: The Infant & Toddler Connection of Virginia is Virginia’s early intervention system for infants and toddlers (age 0-36months) with disabilities and their families. Any infant or toddler in Virginia who isn’t developing as expected or who has a medical condition that can delay typical development is eligible to receive early intervention supports and services under Part C of the Individuals with Disabilities Education Act (IDEA). https://www.itcva.online/
Learn the Signs. Act Early. Virginia: Virginia’s “Learn the Signs. Act Early” page, this nationwide CDC program aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need.(15) Learn the Signs. Act Early. Virginia | Facebook
VA Special Education Resources: The Individuals with Disability Education Act (IDEA) guarantees a free appropriate public education to all eligible children with disabilities . VDOE :: Special Education (virginia.gov)
VA Developmental Disability Service System: resources about accessing services and supports for individuals with intellectual and developmental disabilities. Developmental Disability Service System / Virginia Department of Behavioral Health and Developmental Services
Virginia Neonatal Perinatal Collaborative (VNPC): ensure that every mother has the best possible perinatal care and every infant cared for in Virginia has the best possible start to life. We believe in an evidence-based, data-driven collaborative process that involves care providers for women, infants and families as well as state and local leaders. VNPC (virginia.gov)
VA Medicaid: The Virginia Department of Medical Assistance Services (DMAS) plays an essential role in the Commonwealth’s health care system by offering lifesaving coverage to one in five Virginians, including more than 500,000 newly eligible adults who gained access to care when the program expanded in 2019. Home – Department of Medical Assistance Services (virginia.gov)
PTIC: Parent Educational Advocacy Training Center (PEATC): The Parent Educational Advocacy Training Center builds positive futures for Virginia’s children by working collaboratively with families, schools and communities in order to improve opportunities for excellence in education and success in school and community life. Our special focus is children with disabilities. PEATC – Parent Educational Advocacy Training Center
VA Parent Special Education Connection: This website provides a one-stop-shop for parents, families and caregivers of children with special needs. Parents and families can and do make a difference in their child’s education. Home – VA Family Special Education Connection (vafamilysped.org)
Down Syndrome Associations of VA: Organizations dedicated to ensuring individuals with Down syndrome, and their families, receive the support they need to participate in, contribute to and achieve fulfillment of life in their communities.
- Down Syndrome Association of Greater Richmond – Educate, Empower, Engage (dsagr.org) (Richmond)
- www.dsanv.org (Northern VA)
- dsar.org/ (Roanoke)
Virginia Head Start Association: The Virginia Head Start Association dedicates itself to training and advocacy which enhances and fosters growth of individual members, member agencies, partners and others who impact the lives of children and families. Home (headstartva.org)
Infant and Toddlers Connection: The Infant & Toddler Connection of Virginia is Virginia’s early intervention system for infants and toddlers (age 0-36 months) with disabilities and their families. Any infant or toddler in Virginia who isn’t developing as expected or who has a medical condition that can delay typical development is eligible to receive early intervention supports and services under Part C of the Individuals with Disabilities Education Act (IDEA). The Infant & Toddler Connection of Virginia’s supports and services are available to all eligible children and their families regardless of a family’s ability to pay. Infant & Toddler Connection of Virginia (itcva.online)
My Life, My Community: My Life, My Community is an online tool that helps people with developmental disabilities (DD) and their families answer basic questions about services and supports. My Life My Community Homepage | My Life My Community (mylifemycommunityvirginia.org)
The Genetic Recipe: Understanding DNA, genes, chromosomes, and the genome An Infographic that explains genetics and DNA.
Genetic Changes: How changes in the DNA can lead to differences among people An infographic that explains Genetic Changes.
Variants of Uncertain Significance (VUSs): Understanding an uncertain genetic test result An infographic that explains VUSs
New DNA changes: Understanding how new changes in the DNA 9de novo) can lead children having new DNA changes and differences that their parents don’t have An infographic that explains changes in DNA (de novo)
Explore other genetics resources for patients and families: Patients & Families | NYMAC (nymacgenetics.org)
Learn more about genetics from VA area genetics providers and families:
VIDEO on Your Genetics Appointment
When you or your doctors decide that a genetics appointment may be useful for your family, you may have questions about what will happen at the appointment and how going to the appointment could help your family. In this video, several families from our region talk about their experiences with genetics appointments and why they are glad they went to the appointment. You’ll also hear from some of the genetics providers from the region about what they hope that families gain from coming to their genetics visits.
To get in touch with a Genetic Navigator please leave a message at:
(877) 567-1122 or email cfihelpline@vcu.edu
