Communication gaps, preventable delays and limited support place significant responsibility on patients on the rare disease journey, a new survey finds.
The survey (PDF) was conducted by PANTHERx Rare, an independent specialty pharmacy focused on rare diseases, alongside Morning Consult. It was fielded this month and reached 226 patients, providers and payers. The results, released ahead of Rare Disease Day on February 28, capture the real-world experiences of stakeholders in the rare disease community.
“Rare disease is no longer a niche area,” Richard Faris, Ph.D., chief commercial and clinical officer at PANTHERx Rare, told Fierce Healthcare in an emailed comment. “It’s becoming central to how the industry grows.”