Rare New England Conference 2017

Producer

Description

Produced by the University of Vermont and Rare New England, this series of programs are paret of a conference held on September 23, 2017 in Burlington Vermont. The conference is for patients and families to obtain information about services and resources available to the rare disease community. We believe information empowers all stakeholders, leading them toward improved life quality for patients and families.

Programs in this Series

Genetic and Genomic Testing 101 - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop presenter is Ben Solomon, MD, FACMG, and Managing Director of GeneDx.

Navigating the School System to Get What You Need - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop presenter is Leah Burke, MD, Director of the Clinical Genetics Program at The University of Vermont Medical Center.

Managing a Complex Disease in a Complex Health Care System - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop presenter is Mark Korson, MD, Genetic Metabolic Center for Education, Rare New England Board of Directors.

Promoting Better Life Quality with Helpful Resources - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop panel includes representatives from Panel, Angel Flights, Vermont Therapy Dogs, and the Muscular Dystrophy Association (MDA).

How to Navigate the Insurance World When You Have a Rare Disease - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington Vermont. Workshop presenter is Betty Morse, Health Services Training...

Vermont Family Network - Family-to-Family Support, Information, and Connections - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop presenters are Joanne Wechsler and Connie Simendinger, Vermont Family Network.

Patient Story - How a Newborn Screening Saved Our Son's Life - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Presented by Allison Wood.

Patient- and Family-Centered Care - Improving Care through Mutually Beneficial Partnerships - 09/23/2017

Presented as part of the Rare New England Conference held on 9/23/17 in Burlington, Vermont. Workshop presenter is Amy Cohen, PhD, BCBA, CLSSGB, PMP Patient- and Family-Centered Care Program Manager.

Featured Story

CCTV Receives NEH Grant to Support Community Archives

CCTV Center for Media & Democracy is pleased to announce receipt of a National Endowment for the Humanities (NEH) Humanities Collections and Reference Resources grant alongside 32 peer archival institutions across the country. This $49,927 grant award will support efforts to preserve and expand access to audio/visual community history materials in the CCTV Archives. Read more about this opportunity here!