Being Rare Podcast

This is the exclusive audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. 

The LEAP into Advocacy Virtual Summit was held on June 30, 2022. The theme for this year's summit is Utilizing Social Health and Digital Concepts to Influence Critical Health Decisions. The LEAP into Advocacy summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. The summit includes four specialty sessions, including insights from experts, researchers, counselors, advocates, and more. Session One: Utilizing Social Health Concepts for Transformative Healthcare Solutions; Session Two: Using Culturally Appropriate Resources to Influence Health Equity & Access; Session Three: Leveraging Digital Concepts to Advance Accessibility; Session Four: Advocacy and the Legislative Landscape.   

The E.WE Foundation is a 501c3 healthcare advocacy organization. Learn more at www.theewefoundation.org

Session One of the LEAP into Advocacy Virtual Summit is titled Utilizing Social Health Concepts for Transformative Healthcare Solutions. The session moderator is AudreyStephannie Maghiro, Research Coordinator at the Undiagnosed Diseases Network. The session presenters are Health Union's Sarah Coff, Senior Community Manager and Kristine Zerkowski, Vice President of Community. The fireside chat includes Sarah Coff, Senior, Kristine Zerkowski, and Ilana Jacqueline, Associate Director of Community Development at Health Union. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.

Session Two of the LEAP into Advocacy Virtual Summit is titled Using Culturally Appropriate Resources to Influence Health Equity and Access. The session moderator is Sheyenne Walmsley, MS, Genetic Counselor and Project Manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. The session presenter is Dr. Shruti Mitkus, Director of Genetic Education and Navigation at Global Genes. The fireside chat includes Dr. Shruti Mitkus, Luisa Leal, Founder of the Akari Foundation, and Bethany Zettler, Senior Genetic Counselor and Project Manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.

Session Three of the LEAP into Advocacy Virtual Summit is titled Leveraging Digital Concepts to Advance Accessibility. The session moderator is Being Rare Podcast Host and CEO & President at the E.WE Foundation, Sarita Edwards. The session presenters are Christine Von Raesfeld, Founder & CEO at People with Empathy and Niki Bonet, Digital Solutions Specialist. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org.