National Genetics Education and Family Support Center
The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement in genetic services through a partnership between Genetic Alliance, Family Voices, and Parent to Parent supported by the Health Resources and Services Administration of the U.S. Department of Health and Human Services under the Cooperative Agreement #UH8MC30771.
Family Center supports the federally funded National Coordinating Center and the seven Regional Genetics Networks (RGNs) to improve access to quality genetic services and to reach medically underserved populations. Each RGN is composed of up to eight states and territories and are a central component of the U.S. genetic services system of healthcare providers, public health professionals, and family representatives.
The Family Center encourages patient-centered outcomes by supporting individuals and families with genetic conditions to better engage with healthcare services by:
- Conducting staff and family trainings
- Identifying, promoting and maintaining online resources such as DiseaseInfoSearch and AdvocacyAtlas
- Providing technical assistance and leadership opportunities to the RGNs and National Coordinating Center
- Supporting the collaboration between family-led organizations, the National Coordinating Center, the RGNs, and the Family Center
Download our resources:
Watch our webinars:
- Addressing the Needs of Medically Underserved Populations
- Highlighting Advocacy Tools to Share With Your Community
- Highlighting Family Perspectives on Telegenetics (PDF)
- Highlighting Support Offerings from Parent to Parent USA (PDF)
To learn more about the Family Center or to get involved with your Regional Genetics Network, contact Joel Lopez at firstname.lastname@example.org