When Something Doesn’t Add Up: Rare Disease Clues Nurses Should Recognize

🗓️ June 10, 2026

⏰ 12:00pm PST

📚 1 Contact hour

Presenter: Alicia Truelove, MSN, RN, CV-BC, NC-PD

Rare diseases affect millions of individuals worldwide, yet patients and families often face years of uncertainty before receiving an accurate diagnosis. Explore the clinical, emotional, and systemic challenges associated with the rare disease “diagnostic odyssey,” including barriers to recognition, delayed diagnoses, fragmented care, and healthcare disparities. Examine the evolving role of genetics, diagnostic tracking tools, interdisciplinary collaboration, and patient advocacy in improving outcomes for individuals living with rare conditions.

Discover practical strategies for navigating complex healthcare systems, improving communication between clinicians and patients, recognizing potential diagnostic red flags, and utilizing advocacy organizations and healthcare resources to support care coordination. Emphasis will be placed on collaborative models of care that recognize patients and caregivers as valuable partners in the diagnostic and treatment journey.