2022 Confirmed Speakers

Conference Speakers

Wendy Erler

VP Global Head Patient Experie...

Alexion Rare Disease

Debbie Drane

Senior Vice President Global C...

CSL Behring

Alan J Balch

CEO

Patient Advocate Foundation and National Patient Advocate Foundation

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

Robert Donnell

EVP - Medicines Access

Smartway Pharmaceuticals

Allyson Damikolas

Mother and Carer

Luisa Leal

CEO & Founder

The Akari Foundation

Sonali Chopra

HEAD, Patient Advocacy Relatio...

Genentech

Tom Lambdin

Co Executive Director

Ben's Friends

David Rintell

Vice President, Head of Patien...

BridgeBio

Audrey Damikolas

Rare Disease Patient

Cristiane Benincá

Imaging Core Director

UCLA Metabolism Theme

Kara Ayik

Mother to Rare Disease Patient...

A Book for Children with Rare Diseases, Extraordinary!

Available Shorlty

Senior Representative

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

Eric M. Mueller

Associate Director, Cell Thera...

Orchard Therapeutics

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

Available Shortly

Senior Representative

Mridula Shukla

Global Program Lead, Regulator...

Adverum Biotechnologies, Inc.

Senior Representative

Senior

Avialble Shortly

Senior Representative

Christine Von Raesfeld

Patient Advocate, More Than Lu...

PatientsLikeMe

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