2022 Confirmed Speakers

Conference Keynote Speakers

Wendy Erler

VP Global Head Patient Experie...

AstraZeneca, Alexion Rare Disease

Debbie Drane

Senior Vice President Global C...

CSL Behring

Alan J Balch

CEO

Patient Advocate Foundation and National Patient Advocate Foundation

Sonali Chopra

Director Alliance & Advocacy R...

Genentech

Femida Gwadry‐Sridhar

Founder and CEO

Pulse Infoframe Inc

Monica Weldon

President/Chief Executive Offi...

SYNGAP1 Foundation

Christine Von Raesfeld

Founder/CEO

People with Empathy

Sam Lucas

SVP- Expanded Access Programs

Uniphar Group

Allyson Damikolas

Mother and Carer

Advocate

Audrey Damikolas

Rare Disease Patient

Rare Disease Patient

Luisa Leal,

CEO & Founder

The Akari Foundation

Tom Lambdin

Co Executive Director

Ben's Friends

David Rintell

Vice President, Head of Patien...

BridgeBio

Fred Holdbrook

Director of Biostatistics

Amicus Therapeutics

Lucas Kempf

Medical Officer for the Rare D...

FDA

Tom Lambdin

Co-Executive Director

Ben’s Friends

David Y. Liu

Chief Scientific Officer, Head...

Protagonist Inc

Qing Liu

Founder & Principal Consultant

QRMedSci

Serge Messerlian

President

Actelion Pharmaceuticals US, Inc

Debra Miller

CEO

CureDuchenne

Angela Ramirez Holmes

Founder/President

Cal Rare

Harsha Karur Rajasimha

Co-Founder, Board Director

George Mason University, Fairfax, VA

Javier San Martin

Vice President Clinical Develo...

Ultragenyx

Vij Senthilnathan

Senior Clinical Study Manager

BioElectron Technology Corporation

Mridula Shukla

Global Program Lead, Regulator...

Adverum Biotechnologies, Inc.

Michael A. Swit

FDA Legal Counsel

Law Offices of Michael A. Swit

Christine Von Raesfeld

Patient Advocate, More Than Lu...

PatientsLikeMe

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