Specialty Pharmacy Continuum—Rare Disease Pharmacies: The Quarterbacks for Orphan Drug Regimens

By Cynthia E. Keen
With contributions from Nick Calla, RPh, Orsini’s SVP of Industry Relations

Rare diseases, from a U.S. population perspective, aren’t that rare. Nearly 1 in 10 Americans, an estimated 30 million people, have a rare disease, according to the Government Accountability Office (bit.ly/3PvqpF3). Yet only 23 specialty pharmacies in the country carry the URAC Rare Disease Certification.

A session hosted by URAC at the 2024 NASP Annual Meeting & Expo, in Nashville, Tenn., discussed the unique nature—and opportunities—of rare disease pharmacy management, and how different health systems have tackled this specialty.

Rare disease pharmaceutical treatments require an additional layer of expertise of a specialty pharmacy, in addition to much greater staff education, patient and manufacturer interaction, and clinical coordination, according to session moderator Heather Bonome, PharmD, the director of pharmacy at URAC. . . .