Speakers

Kyle Bryant

Spokesperson

Friedreich’s Ataxia Research Alliance (FARA)

Tiffany Cook

Senior Director

CureDuchenne Cares

Tom Croce

Vice President, Patient Advocacy

bluebird bio

Jill Dolgin

Executive Director, Global Patient Advocacy

AGTC

Sarah Samaroo Scull

Director of Biomedical Content

One World DMG

Nan Doyle

Associate Director, R&D Patient Engagement - Rare Genetic and Hematology TAU & PDT

Takeda

Emily Fields

Associate Director, Patient Advocacy

bluebird bio

Sarah Friedhoff

Senior Manager, Patient Advocacy and Clinical Affairs

Abeona Therapeutics

Nicolas Garnier

Director of Patient Advocacy, Global Product Development

Pfizer

Linda Lowes

Principal Investigator, Center for Gene Therapy

Nationwide Children’s Hospital

Emily McGinnis

Chief Patient Officer & Head of Government Affairs

Taysha Gene Therapies

Christeen Moburg

Head of Patient Advocacy

Sangamo Therapeutics

Samantha Parker

Senior Vice President & Chief Patient Access Officer

Lysogene

Tom Pulles

Vice President, Head of Medical Affairs & Patient Advocacy, EMEA

Ultragenyx

Magali Taiel

Chief Medical Officer

GenSight Biologics

Nita Patel

Senior Director, Patient & Professional Advocacy

Amicus Therapeutics

Susan Walther

Director of Patient Engagement

Friedreich’s Ataxia Research Alliance (FARA)

Daniel Leonard

Senior Director, Global Patient Advocacy

uniQure

Paula Evans

Chairperson

FAST

Fernanda Copeland

Executive Director,Global Head Patient Advocacy & Engagement

AVROBIO

Edgar Vega

Senior Manager, Patient Advocacy

uniQure

Allyson Berent

Chief Scientific Officer

FAST

Danielle Boyce

Director of Research Technology

NORD

Christian Rubio

Vice President, Strategic Advancement

Global Genes

Anne Rowzee

Associate Director for Policy, CBER

FDA

Karen Jackler

Program Manager, Patient Engagement, CBER

FDA

Christine McSherry

BSN, RN CEO, Co-Founder

Casimir

Mindy Leffler

President, Co-Founder

Casimir