Leadership

Medical Advisory Board

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Florian Eichler, MD

Learn more about Dr. Eichler →

Robert F. Sidonio, Jr., MD, MSc.

Learn more about Dr. Sidonio →

Rebecca Spencer, MD, PhD

Learn more about Dr. Spencer →

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Julie Cohen, ScM, CGC

Learn more about Julie →

Rebecca McClellan, MGC, CGC

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Jamie Kostialik, MS, CGC

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Board of Directors

Emma Bliss

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President

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Emma Hayes

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Treasurer

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Julia Apodaca-Lane

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Mita Dhullipala

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Mindy Cameron

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Liz Kennerly

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Audrey Russell

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Amy Englert

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Michelle Erskine

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Vice President

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Tess Nelson

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Program Lead

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Jade Day

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Jennifer Krafchik

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Staff

Taylor Kane

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Executive Director

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Volunteer Leadership Team

Sydne Pantaleon

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Brand Ambassador

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Carrier Advisory Committee

Katie Marino

Adrenoluekodystrohy - USA

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April Bizzell

Chronic granulomatous disease - USA

Autumn Prince

Ornithine transcarbamylase deficiency - Canda

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Noelia Buniva

Adrenoleukodystrophy - Argentina

Anna Torrey

Adrenoleukodstrophy  - USA

Shellye Horowitz

Hemophilia  - USA

Frani Broussard Denenburg

Adrenoleukodystrophy - USA

Patricia Miletto

Aarskog syndrome - USA

Ann Kendall

Hemophilia  - USA

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Ruth Gutierrez

Adrenoleukodystrophy  - USA

Eilidh Stewart

Fabry disease - Scotland

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Sarah Tong

Adrenoleukodystrophy - USA

Laurie Hayes

Adrenoleukodstrophy  - USA

Janisse Jaimeyfield Gass

Adrenoleukodystrophy - USA

Holly Rausch

Adrenoleukodystrophy - USA

Deb Jennsen

Duchenne muscular dystrophy - USA