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It's Time to Listen to Rare Disease on YouTube!

Pathways to Trust, a non-profit that intends to improve patients’ and healthcare providers’ relationships navigating rare diseases through communication training programs, will soon debut its YouTube channel: Time to Listen to Rare Disease!

The name says it all Time to Listen to Rare Disease will be a space for individuals to learn how to navigate and improve health care experiences specifically for rare diseases. The channel will feature insightful interviews with leaders in the rare disease space, starting with partners in their premiere initiative, Time to Listen to Sickle Cell Disease. We will be speaking with patients and patient advocates, healthcare providers, and industry leaders about the clinical, and just as important, the social, behavioral, and emotional aspects of living with a rare disease. These experts will share their experiences, their medical knowledge, and their visions for improving the care and experiences of patients and families as they navigate the healthcare system.

Time to Listen to Rare Disease on YouTube will promote improved clinical outcomes and quality of life for rare disease patients through these conversations. This social media channel will allow us to share our knowledge on a global scale and draw resources from a variety of sources to expand, geographically and substantially, beyond our in-person and virtual programs.

Time to Listen to Rare Disease will include several upcoming topics. To begin with, viewers can expect guidance in compassion and communication in the Emergency Department, diagnostic journeys, racial bias in healthcare. Additionally, viewers can expect insight on new treatments on the horizon, transitioning from pediatric care to adult care, communication with healthcare providers and health literacy for rare disease patients.

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