A rare disease is one that affects fewer than 200,000 Americans, necessitating care that is innovative, personalized, and patient-centered. 
URAC’s CEO Dr. Shawn Griffin recently moderated a session at AXS24, the 20th Asembia summit, on the crucial role of specialty pharmacy in delivering high-quality rare disease care. The panel included Jennifer Carter from Medical University of South Carolina (MUSC), Richard Faris from PANTHERx Rare Pharmacy, and Josh Weber from UVA Health — all of whom have received URAC’s Rare Disease Certification.
Our Rare Disease Certification sets high safety and quality standards for rare disease care programs and institutions. Panelists emphasized the importance of focusing on the patient journey with personalized care backed by data-driven approaches. The discussion included strategies for organizations wishing to begin offering rare disease care — building a strong foundation for scalable programs, building patient engagement and fostering patient understanding.
In an article in the American Journal of Managed Care (AJMC), which features highlights from the session. Dr. Griffin says, “When it comes to rare disease, we really want to focus on the patient and the patient journey—because these are patients who are generally dealing with a unique disease and have unique needs, and how organizations address those as part of care. It’s about meeting patients where they are.”
- Read more on the American Journal of Managed Care (AJMC) here
- Learn more about URAC’s Rare Disease Certification here
