After a great deal of collaboration and hard work from many of our staff, we are excited to announce the launch of URAC’s Rare Disease Pharmacy Center of Excellence Designation program. As precision medicine emerges, rare disease diagnoses and associated orphan drugs continue to grow. Currently, there are 7000 recognized rare diseases which affect 30 million Americans. In the past few years, significant progress has been made in the treatment for these diseases, with an average of 140 drugs being designated as orphan drugs by the FDA each year over the past decade.

Individuals with rare disease diagnoses require in-depth and often long-term management from both their medical and pharmacy teams. The role of pharmacies caring for individuals with these rare diseases is central to their treatment. Recognizing the growing importance of these pharmacies, the Product Development, IT, Accrediting and Client Services, and Pharmacy teams have worked together over the last several months to create and launch a designation that addresses the needs of individuals living with a rare disease.

Currently, clients can apply for this designation if they have achieved, or are in the process of also applying for, URAC’s Specialty Pharmacy Accreditation. The organization must treat patients taking an orphan medication (a medication without any non-orphan indications).

The designation publications (such as the Guide, Standards Only, Standards-at-a-Glance, and FAQs) will be located on the Product Development team’s section of the Sharepoint site. The folder can be accessed by navigating to the Product Development section under the Sales & Marketing tab of Sharepoint, where there is a subdirectory for each suite of programs; the Rare Disease Pharmacy Center of Excellence folder linked above will be found within the Pharmacy Quality Management subdirectory.

Thank you to the many URAC staff members who assisted in creating this designation, as well as to our Board, the Health Standards Committee and other external stakeholders, especially our Rare Disease Advisory Panel. Through the efforts of all these individuals, URAC has been able to take this opportunity to bring quality improvement to the rare disease pharmacy space and continue striving to improve the lives of individuals living with rare diseases.