By: Sue McGuinness, PhD, CHCP
Dustin Ensign and Kathleen Moreo presented “A Rare CME Formula – Aligning Strategic Considerations for Orphan, Rare and Ultra-Rare Diseases” at the CBI annual meeting on Sept. 13, 2018. There are 7,000 rare diseases currently known, impacting approximately 10 percent of the U.S. population. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. An additional challenge is that the literature shows it can take nearly a decade for a patient to obtain a confirmatory diagnosis in a rare disease, emphasizing under-recognition and unmet needs in awareness, screening practices and diagnostic barriers among the clinical community.