Rare Disease Advisory Council 3.24.26

Rare Disease Advisory Council · March 24, 2026

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Opening and chair's remarks

Presentation

0:06 → 0:55(49s)

Leslie Bennett (co‑chair) opened the meeting, identified the council’s purpose, and said the group lacks a quorum so minutes from January and February will be postponed until April; she listed the meeting topics including awareness/advocacy work, the annual report, website updates and the Denise Denzo Foundation walk.

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Leslie Bennett and members of the Rare Disease Advisory Council discussed emergency protocols and opposed aspects of House Bill 5557 that would adopt a DSM‑5–based definition of intellectual disability, reviewed outreach and website plans under DPH, and agreed to close the meeting after planning participation in an April awareness walk.

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Transcript

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