Webinar: Improving Services for Individuals with Genetic Conditions

July 1, 2015

Thursday, July 9, 2015, 12:00-1:00 pm EDT / 11:00 am – 12:00 pm CST

Link to register: https://attendee.gotowebinar.com/register/3577365901707364098

What would improve the care experience for individuals with genetic conditions? What are the barriers that prevent families from accessing genetic counseling and testing? To fully answer these questions, we need to engage individuals and families to learn more about their unique experiences. But first, we need your help in crafting the critical questions that will inform the future of genetic services.

Genetic Alliance is working with the National Coordinating Center for the Regional Genetic Services Collaboratives(link is external) to improve healthcare for individuals with genetic conditions. As part of this effort, we will conduct a national needs assessment to capture data on barriers and gaps and has been tasked by the Health Resources and Services Administration (HRSA(link is external)) with proposing a framework for a new model of regional genetic services. Join this webinar and get involved as we embark on this effort to gather data that is meaningful and actionable for both HRSA and you/your community.

Genetic Alliance Family Advocates Network

This new listserv was created by Genetic Alliance to encourage dialogue and ensure the voices of families and family advocates are represented in conversations around improving access to and the quality of genetic services. Members will be notified about upcoming calls and opportunities to provide feedback and be a part of national efforts to assess and address the needs of individuals with genetic conditions and their families. To join, visit https://groups.google.com/forum/#!forum/familyadvocatesnetwork.

For more information, please contact Sharon Romelczyk.

Categories: Advocates