News
RECENT POSTS
The Pennsylvania Rare Disease Advisory Council (PARDAC) today brought together rare patients, caregivers, advocates, policymakers and health care professionals at its inaugural Patient Stakeholder Summit. The summit included the unveiling of key initial findings of PARDAC’s ongoing Pennsylvania Rare Disease Needs Assessment survey, gathering Pennsylvania-specific insights from rare disease patients and caregivers from across the Commonwealth, as well as plenary sessions focused on the topics of gene therapy and newborn screening.
HARRISBURG, PA – The Pennsylvania Rare Disease Advisory Council (PARDAC) hailed the recent passage of Act 133 amends the Newborn Child Testing Act to mandate that 37 disorders be screened at birth. Newborn screening is one of the most critical public health programs in the United States. Before this legislation, in addition to tests for…
HARRISBURG, PA — The Pennsylvania Rare Disease Advisory Council (PARDAC) today called upon the rare disease community to participate in a first-of-its-kind statewide needs assessment. The results of the survey will help provide a better picture of what rare disease patients face and guide the state’s future policies and initiatives related to rare diseases.“Since the…