National Genetics Education and Family Support Center

Improving family engagement for individuals and families who have a genetic condition

Project Summary

The Genetic Alliance partners with Family Voices on the National Genetics Education and Family Support Center. Funded by MCHB, this national center works to improve family engagement for individuals and families who have, or at-risk of having, a genetic condition; provide support for such individuals and families; provide education and resources on genetic conditions; and link individuals and families to services, especially those in underserved areas. As a partner to the Center, the Family Voices provides technical assistance, resources, and training for families affected by genetic conditions, and technical assistance and resources tailored to the individual needs of the seven Regional Genetics Networks (RGNs).

Family Voices created guides for each RGN that detail the services and supports provided by the Family Voices State Affiliate Organizations, the Family-to-Family Health Information Centers, the state Parent-to-Parent Affiliates, the state affiliates for the National Federation of Families for Children’s Mental Health, and the Parent Training and Information Centers and Community Parent Resources Centers. The guide includes questions to help RGN staff and families know where to refer families for support based on their needs. The documents include links and a region-specific table (updated November 2019) to identify the state contacts for each organization.

Values

This project supports the Family Voices values:

  • Effective family/professional partnerships at the local, state, and national level
  • Inclusion and connection of underserved families representing the cultural, linguistic and geographic diversity of the population
  • Children and youth with special needs and their families becoming empowered self-advocates
  • Family engagement in prevention, health and wellness in clinical and community settings.