Rare Disease Advisory Council 1.27.26

Connecticut Rare Disease Advisory Council · February 2, 2026

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Introductions and chair remarks

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Chair Leslie Bennett opened the meeting, introduced herself as patient representative and co-chair, and invited members to introduce themselves (Michelle Spencer Manson, Joanna Gell, Dorian Long, Beth Wynne, Emily Germaine Lee and others). She framed the meeting as "jam packed" and said she wanted to start the year "off with a bang."

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Connecticut Rare Disease Advisory Council (RDAC) held a virtual meeting to introduce members, announce statewide rare disease events, review legislative priorities (including support for patient-specific emergency protocols/HB 6920), hear public testimony from patients, and receive a presentation about the CodeRare training and resource platform.

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Transcript

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