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As the medical community has learned more about rare diseases and the complex medications and models used to treat rare disease patients, rare pharmacy has emerged as a growing sub-section of specialty pharmacy with its own unique domain of knowledge and skills. With this in mind, URAC has called on the expertise of industry leaders including PANTHERx and the National Organization for Rare Disorders (NORD) to participate in an advisory panel to develop a rare disease recognition program.

It is often difficult for patients with rare diseases to receive an accurate diagnosis, and even then, it is difficult to make sure these patients receive proper supportive expertise and treatment. Rare disease care becomes even more complex when we consider not only the patients, but the caregivers, biopharma partners, payers, and prescribers as well. The needs of these groups must be addressed and continuously managed by the specialty pharmacy. A rare disease recognition program will assist providers to properly deliver therapies to patients living with rare diseases by accrediting specialty pharmacies who provide the necessary standard of care to properly aid patients suffering from rare conditions.

“The development of a rare disease recognition program is a natural evolution of the work URAC performs in specialty pharmacy accreditation,” according the Shawn Griffin, MD, URAC president and CEO. “Our goal is to recruit expert panelists including clinical providers, pharmacists, hub providers, rare disease consultants and biopharma representatives to inform the development of standards. We envision that a rare disease pharmacy recognition program will build upon the essential role that pharmacists and other health professionals play in the management and education of individuals with rare diseases.”

“PANTHERx is honored to be collaborating with our national accrediting bodies to create quality standards for rare pharmacy designation”, according to Dr. Gordon Vanscoy, PANTHERx CEO and Chairman. “Rare pharmacy represents a growing sub-specialty that has a unique domain of knowledge and skills, including nuanced biopharma partnering, orphan product distribution, financial and clinical support, payer contracting, near-real-time data management and reporting, and white-glove service that each patient deserves. This initiative must be stakeholder inclusive and establish a stringent set of quality standards for rare pharmacies because our patients deserve it.”

Join the Discussion

URAC is seeking other organizations who wish to serve on this Rare Disease Advisory Panel. As an independent accreditor, URAC will convene stakeholders to develop this recognition program with clear standards and evidence of performance. The Advisory Panel will convene via webex facilitated discussions for a total of 5 to 6 one-hour sessions.

Selection of participants for the Rare Disease Advisory Panel will reflect the diversity of key healthcare stakeholders in accordance with URAC’s Conflict of Interest Policy. Members are selected based upon their expertise, their potential contribution, and the need for input from a stakeholder perspective.

Any interested party wishing to participate can do so by contacting Robin Adams at 202-862-8835 or radams@urac.org by July 31, 2019.

About PANTHERx Rare Pharmacy

PANTHERx Rare Pharmacy, The Rare Disease Specialty Pharmacy®, is headquartered in Pittsburgh, Pennsylvania. PANTHERx Rare’s mission is to transform lives by delivering medical breakthroughs, clinical excellence, and access solutions to patients afflicted with rare and devastating conditions. Every day we create ways to Define RxARE®, by developing focused solutions, bold innovations, and novel clinical services associated with the life-transforming therapies that we deliver.

PANTHERx was awarded 2018 Specialty Pharmacy of the Year by the National Association of Specialty Pharmacy as well as the American Pharmacy Purchasing Alliance. Zitter Health Insights awarded PANTHERx the Specialty Pharmacy Patient Choice Award winner for both 2017 and 2018. As a quad-accredited pharmacy, PANTHERx holds accreditations from URAC, VIPPS, ACHC, and CPPA.

About URAC

Founded in 1990, URAC is the independent leader in promoting healthcare quality through leadership, accreditation, measurement and innovation. URAC is a nonprofit organization using evidence-based measures and developing standards through inclusive engagement with a range of stakeholders committed to improving the quality of healthcare. Our portfolio of accreditation and certification programs span the healthcare industry, addressing healthcare management, healthcare operations, health plans, pharmacies, telehealth providers, physician practices, and more. URAC accreditation is a symbol of excellence for organizations to showcase their validated commitment to quality and accountability. For more information, visit www.urac.org.