Current Events: Challenges in Rare Disease Research
In 2023, the Pennsylvania Health Care Cost Containment Council (PHC4) assisted the Pennsylvania Rare Disease Advisory Council (PARDAC) in analyzing over 1,200 survey responses collected from the rare disease community and presenting their findings to members of the PA Legislature. As the second installment in PHC4's Current Events series, PHC4 analysts investigated what exactly it is that makes rare diseases so difficult to study.