How do we engage and empower consumers?
Genetic Alliance continues to expand its collaborative network of partners and develop accessible tools to improve consumers' (individuals and with genetic conditions and their families) access to and knowledge about genetic services.
Genetic Alliance’s network of partners includes more than 700 hundred disease-specific support and advocacy organizations, and the network grows continuously. Regular outreach to potential new partners enables us to provide more individuals and families with relevant advocacy resources and disease information. We connect individuals, families, providers, researchers, and others to information on over 13,000 conditions and their related support and advocacy networks through Disease InfoSearch.
Support and Advocacy Resources
In collaboration with Parent to Parent USA and Family Voices, we developed the Advocacy ATLAS with resources from parents, parent advocacy groups, disease-specific advocacy groups, disability groups, and other partners. The ATLAS features more than 240 tools on advocacy, communication, and leadership skills for individuals with genetic conditions, special healthcare needs, or both, as well as their family members.
Perspective and Direction
A Consumer Advisory Group gives feedback on project activities and ensures that tools and products are accessible and fit the needs of individuals and parents. Self and/or family advocates from all seven Regional Genetics Collaboratives (RCs) are part of the Advisory Group. In turn, the Consumer Network provides support to other consumer workgroups implementing projects within the RCs.
Want to know more about the RCs and how you can contribute your important perspective as an individual or family member? The NGECN Consumer Advisory Group created an orientation guide entitled, "Bringing Your Voice to the Table: Maximizing the Individual and Family Perspective in the Regional Genetics Collaboratives."
Outreach and Education
We strive to connect consumers with information, support, and/or programs that will improve their access to and knowledge about genetic services. Some of our outreach and consumer engagement activities include disseminating family-centered online and print materials, providing targeted training and education opportunities, and supporting the expansion of existing outreach projects.
The National Genetics Education and Consumer Network (NGECN), is a three-year program funded by the Health Resources and Services Administration (HRSA) (Grant no. U22MC04100). Genetic Alliance works with the American College of Medical Genetics and Genomics (ACMG) on this initiative through the National Coordinating Center for the Regional Genetics Collaboratives (NCC). The content on this page is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of HRSA. Please direct any comments, feedback, or questions to Sharon Romelczyk, NGECN Program Manager, at firstname.lastname@example.org.