XCenter: Rare Diseases Module 3

MODULE 3: Navigating the Healthcare System – Tools, Tips, and Advocacy

This session will equip participants with actionable strategies and resources to navigating diagnosis and treatment as well as living with rare disease, including these key topics:

– How to advocate for yourself or a loved one with a rare disease

– Building your care team: PCPs, specialists, care coordinators, genetic counselors

– Strategies for working with healthcare providers

– Maximizing care with limited resources

– Using technology: Patient portals, apps, and telemedicine

– Understanding insurance and appealing denials

– Finding and using rare disease registries, networks, and support groups

– Legal protections and rights (ADA, school-based supports, employment laws)

About The Presenters:

Darby Gavin, MS, The National Organization for Rare Disorders (NORD)

Darby Gavin, MS is a Senior Community Engagement Manager at the National Organization for Rare Disorders (NORD). In this role, she focuses on driving grassroots organizing efforts and nourishing individual engagement between members of the rare disease community and NORD. She oversees a few key organizational campaigns and projects, including Rare Disease Day, the Living Rare Study, and the Rare Action Network State Ambassador program. She’s also involved in training and mobilizing advocates to take action on critical issues impacting the entire rare disease community. Her background is in community health and nutrition, and she earned her Master of Science in Healthcare Emergency Management from Boston University’s Chobanian & Avedisian School of Medicine.

Carter Hemion, Advocacy & Accessibility Coordinator, Stripes of Solidarity

Carter Hemion is a rare disease advocate living with classical Ehlers-Danlos syndrome, a rare genetic connective tissue disorder, and its co-occurring conditions. Carter is the Advocacy & Accessibility Coordinator for Stripes of Solidarity to amplify underrepresented voices in the rare disease space, equip advocates with meaningful tools, and promote equity across research, policy, and care. They are currently the Patient Engagement Director for Immunocompromised Association, a Patient Expert in the International Consortium on EDS & HSD, a YARR Advisory Committee Member at the EveryLife Foundation for Rare Diseases, a member of FDA & CTTI’s Patient Engagement Collaborative, and volunteer with other organizations in their communities to create change. Through their work as an advocate and storyteller, they fight for improved patient access to care and support, reduced diagnostic odysseys, and equitable innovation so that all patients and families can access what they need to thrive.