F2 - Family Engagement Shaping the Future of Genetic Services

Please click the Play Video button to watch the video prior to joining the Q&A.

Full Description: The National Genetics Education and Family Support Center (Family Center) is supported by the Health Resources and Services Administration of the U.S. Department of Health and Human Services to 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

The Family Center also provide tools and resources to support family engagement in genetic services through a partnership between Genetic Alliance, SPAN Parent Advocacy Network, and Parent to Parent USA.

Collaboration allows for different groups to bring together ideas and resources to to support the work of the Regional Genetics Networks and increase parent engagement and leadership at the local level. This interactive session developed and presented by parent-professionals will highlight the benefits of family engagement. Activities and strategies used by the Family Center to meet the objectives for increasing family engagement will also be shared. In addition, participants will also be able to develop a SMART Action Plan that is Specific, Measurable, Achievable, Relevant, and Time-bound to use in their family engagement efforts.

Learning Objectives:

• Identify the benefits to Family Engagement in genetic services.

• Learn about the activities of the Family Center to support increased engagement of families.

• Analyze ways in which they have already engaged/want to engage parent leaders in their own work by applying the examples shared.

Abbreviated Description: The National Genetics Education and Family Support Center (Family Center) supported by the Health Resources and Services Administration of the U.S. Department of Health and Human Services to support 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. Join this interactive session presented by parent-professionals to learn about the activities of the Family Center in collaboration with Expecting Health, SPAN, and Parent to Parent USA to meet the objectives for increasing family engagement. Participants will also leave with a SMART Action Plan that is Specific, Measurable, Achievable, Relevant, and Time-bound to use in their family engagement efforts.