XCENTER

This session will provide a clear foundation for understanding rare diseases, from how they are defined in the U.S. and globally to the myths and realities about their prevalence. We’ll explore the causes and types of rare diseases, the long and often difficult diagnostic journey, and the medical, emotional, and financial impact on patients and families. The session will also highlight health equity considerations and introduce participants to the broader rare disease ecosystem and available resources.

• Learning Objectives
• On-Demand Video
• Resources
• Available for 1.0 BCPA JEDI CE

This session explores the lived experiences of rare disease patients and the systemic barriers they encounter throughout the care journey. From difficulties accessing specialists and navigating insurance to fragmented care and the emotional toll of stigma and dismissal, participants will gain insight into the complex realities faced by patients and families. The discussion will also address social determinants of health, inequities for underrepresented populations, and the challenges of transitioning from pediatric to adult care.

• Learning Objectives
• On-Demand Video
• Resources
• Available for 1.0 BCPA JEDI CE

This session focuses on practical strategies to help patients, families, and advocates successfully navigate the healthcare system with a rare disease. Participants will learn how to build an effective care team, work collaboratively with providers, and make the most of limited resources. The session will also cover tools like patient portals and telemedicine, strategies for understanding and appealing insurance decisions, and how to access registries, networks, and legal protections to support care and advocacy. 

• Learning Objectives
• On-Demand Video
• Resources
• Available for 1.0 BCPA JEDI CE

This session emphasizes the importance of cross-stakeholder collaboration to improve rare disease care and outcomes. Participants will explore how bias and misinformation shape patient experiences, the role of cultural humility in care, and strategies to better engage underserved communities. Real-world examples of effective community-based and system-level initiatives will be shared, along with practical steps healthcare professionals and advocates can take to foster meaningful partnerships and drive equity forward. 

• Learning Objectives
• On-Demand Video
• Resources
• Available for 1.0 BCPA JEDI CE

This interactive panel will bring together voices to reflect on the lessons from the series and explore the path forward in rare disease care. Discussion will focus on how rare disease impacts not only the patient but also families and communities, highlighting opportunities for advocacy, equity, and collaboration. 

• Learning Objectives
• On-Demand Video
• Resources
• Available for 1.0 BCPA JEDI CE