Delaware General Assembly

Passed 6/8/23

The General Assembly has ended, the current status is the final status.

SB 55 w/ SA 1

6/1/23

Poore

This amendment makes the following changes to Senate Bill No. 55: 1) It establishes the Rare Disease Advisory Council within the Office of the Lt. Governor instead of the Department of Health and Social Services. 2) It amends the provision about the hospital administrator appointee to the Council by requiring that the appointee be from an acute care hospital in Delaware. 3) It increases the size of the Council from 11 members to 14 members, by adding the following: a) a second Delaware resident, who either has a rare disease or has experience caring for a person with a rare disease, b) an administrator from a biopharma manufacturer, and c) a licensed genetic counselor. 4) It establishes that staffing support for the Council will be provided by the University of Delaware Institute for Public Administration.

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