Name: RDAC Full Council Meeting
Start: 2025-07-24T09:00:00-0400 - 2025-07-24T11:00:00-0400

Overview

Welcome

Introduce new members- Lisa Jenike, DNP and Nicole Nyberg

Roll Call

Rare Disease Guest Speakers:

Beatriz Fraga, introduced by Isaac Seigel, MBA, MSW, LICSW and supported by her mom, Renata Fraga
Taina Christina

Vote to approve minutes from the last full council meeting (May 22, 2025)

Transition from Pediatric Care to Adult Care for those with a Rare Disease

Guest Speakers: Elaine Gabovitch, retired Director of the Division of Children and Youth with Special Health Needs (DCYSHN) at the Department of Public Health and Beth Bostic, Acting Director of DCYSHN
Guest Speakers: Dr. Ahmet Uluer and Susan Shanske, LICSW, Boston Children’s Hospital
Guest Speaker: Nathan Grant

Discussion

Subcommittee Updates

Policy Subcommittee - Glenda Thomas
Research Subcommittee – Tai Pasquini
Steering Subcommittee – Dylan Tierney

RDAC membership engagement survey results – Tai Pasquini

Announcements

Adjourn

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Public Meeting Notice RDAC Full Council Meeting

Overview

Agenda

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