URAC Calls for Participants to Convene a Rare Disease Advisory Panel

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WASHINGTON — URAC is excited to announce their plan to convene an expert advisory panel including Amber Pharmacy, PANTHERx Rare Pharmacy, National Organization for Rare Disorders (NORD), and other interested parties to develop a rare disease recognition program. Because of the sporadic nature of rare disease cases, it is challenging for professionals to diagnose, treat, and support people living with these diseases. There are more than 7,000 known rare diseases; only 5% have an available treatment. The FDA drug development pipeline is dominated by orphan and ultra-orphan therapies to treat rare diseases, but a rare disease recognition program will assist in properly delivering these therapies to patients by developing standards for helping patients suffering with these devastating conditions.

Patients with rare diseases often struggle for years before receiving an accurate diagnosis from providers with expertise to treat them. A rare disease diagnosis can be life changing for an entire family, especially since many rare diseases impact children. As such, qualified support services for both patients and caregivers are critical. Such services include patient and caregiver support, education, clinical management, care coordination and financial assistance. Specialty pharmacies who treat rare disease patients must have the unique capabilities to address the intensive needs of the biopharma partner, payer, prescriber, and, most importantly, the patient. A program designed to accredit pharmacies in providing the standard of care necessary to aid patients with rare diseases will ensure that more patients receive the care they need.

“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.  “We have recruited experts including Amber Pharmacy, PANTHERx Rare Pharmacy and NORD thus far.  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.”

Aaron Weise, president of Amber Pharmacy, says, “Amber Pharmacy is excited to partner with URAC, NORD and industry experts to differentiate specialty pharmacies providing exceptional care for patients and families affected by rare diseases.  These patients face a multitude of challenges and uncertainties associated with their condition, many of whom are without the benefit of an FDA approved treatment or formal diagnosis.  Specialty pharmacies are uniquely positioned to connect rare disease patients to critical resources necessary to maintain and improve their quality of life.  We look forward to working with our peers to ensure the overall health care experience for patients living with a rare disease incorporates their voices and concerns.”

PANTHERx is honored to be collaborating with URAC to create quality standards for rare disease pharmacy designation”, says to Dr. Gordon Vanscoy, PANTHERx CEO and Chairman.  “Rare pharmacy represents a growing sub-specialty that has a unique domain of knowledge and skills.  This initiative must be stakeholder inclusive and establish a stringent set of quality standards because our patients deserve it.”

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 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.