The National Genetics Education and Family Support Center is a three-year initiative (June 2017- May 2020) led by an organization called Genetic Alliance in partnership with the Regional Genetics Networks, Family Voices, and Parent to Parent USA. The focus of Family Center is to build a network of partners and develop accessible tools to improve access to and the quality of genetic services.
The Family Support Center aims to support meaningful participation of individuals with genetic conditions and their families (we use the term consumers) in both the Regional Genetics Networks and in other programs focused on genetics and health to encourage patient-centered outcomes. All 7 regions have active participation from consumers, either in the form of a dedicated workgroup or as individual advocates that participate on RGN workgroups. The Family Support Center hosts webinars and creates materials on topics of interest to the regions to support recruitment, engagement, and participation of consumers.
The Family Support Center has a Consumer Advisory Group made up of at least one representative from each RGN that either has a genetic condition or is a family member of a person with a genetic condition. Gaining perspective from individuals who have experienced getting a genetic diagnosis and/or using genetic services can help ensure RGN/NCC/Family Support Center efforts address the gaps and barriers around accessing genetic services and support. Consumer engagement looks different in each of the 7 regions but there is a strong commitment by all to ensuring meaningful participation and contribution from consumers.
More information about the work of the Family Support Center can be found through Genetic Alliance.