Explore the new Resource Repository for resources developed by the regions, NCC, NGEFC, and national partners in a myriad of areas including education, telegenetics, and healthcare access and financing.
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.
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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Cooperative Agreement #UH9MC30770-01-00 from 6/2017-5/2020 for $800,000 per award year.
This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.