News

JULY 7, 2017

The Rare Disease Advisory Council Act, Act 14

The Rare Disease Advisory Council Act, Act 14, was enacted on July 7, 2017 by Pennsylvania Governor Tom Wolf. The Secretary of Health, Rachel L. Levine, M.D, designated Bureau Director Tomas J. Aguilar from the Department of Health as the Chair.

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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.

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