What is a Rare Disease? 

 In the United States, a rare disease is defined as one that affects fewer than 200,000 people. An estimated 7000 rare diseases exist but only 500 have FDA-approved treatment options, leaving 90 percent of rare diseases without an approved therapy. Finding the best medications and therapies for conditions that affect so few people is a challenge. Advances in science offer real hope to patients, as well as significant opportunities for specialty pharmacies. To support and recognize the high level of skills required to serve these patients, Utilization Review Accreditation Commission (URAC), the nation’s leading health care accreditation authority, offers its Rare Disease Pharmacy Center of Excellence Designation to organizations that can rise to this challenge.

Strict Policies & Procedures

URAC recognizes the extended needs of individuals with rare disease and the requirements of in-depth, often long-term treatment management. The success of individuals with rare disease depends on the role of pharmacies extending care and treatment. URAC’s popular Specialty Pharmacy Accreditations is given to pharmacies who ensure patients have access to appropriate medications, adhere to drug safety protocols, provide quick and accurate turnaround times for prescriptions, establish timelines of customer service operations, and maintain a commitment to the care of patients. The unique distinction of the URAC Rare Disease Pharmacy Center of Excellence Designation means a Specialty Pharmacy has proven to patients, manufacturers, and providers a commitment to attain and maintain the highest level of professional standards.  

To receive a URAC Rare Disease Designation, a pharmacy has demonstrated the following-

  • Demonstrated a more customized and high-touch approach to coordinated, compassionate patient care
  • Provided stringent storage and handling protocols to address the demands of sometimes delicate and expensive rare disease medications
  • Confirmed comprehensive data reporting processes to meet intricate reporting requirements
  • Elevated contracting power, credibility and differentiation over competitors as payers and stakeholders are assured of organizational competency
  • Provided a practical roadmap for ongoing improvement with operational and clinical infrastructure, processes and efficiencies
  • Delivered risk management peace-of-mind with standards that prevent, protect and manage liabilities
  • Inspired innovation through a non-prescriptive approach to support your specific business or clinical practices
  • Validated compliance with all state and federal regulations, licensing and other regulatory requirements

Extra Steps to Success

Specialty Pharmacy professionals are familiar with rare conditions and the medications used to treat them and taking the extra steps needed to receive the Rare Disease Designation ensures the best practices are taken to reach success.  

PFSP Specialty Pharmacy provides patients and their physicians an exceptionally high standard of care with our growing team of specialized pharmacists and staff.  Our dedicated team of pharmacists focus on improving adherence for patients and work to find an approach that works best for them. Bringing a fresh take on what a Specialty Pharmacy can and should be, we are committed to the care of our patients.  We take pride in being an ethical resource within our community and strive each day to help our patients live enriching and full lives. 

https://www.pharmacytimes.com/view/rare-pharmacy-emerges-from-specialty-part-1

https://www.urac.org/accreditation-cert/rare-disease-designation/