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A Conversation About Patient Data

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A Conversation About Patient Data
A Conversation with clinical, industry, and advocacy leaders about the value, uses, and ethics of patient data collection.
Vanessa Vogel-Farley John Schreiber Gabi Belfort Hillary Savoie


Vanessa Vogel-Farley

DUP15Q Alliance and RareX

John Schreiber

MD, Children's National

Hillary Savoie

PhD, Founder/Director TCSF

Gabi Belfort

MD, PhD, Praxis Precision Medicines

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The Cute Syndrome Foundation

The Cute Syndrome Foundation raises awareness, funds research, and supports families of people with SCN8A mutations.


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