Global Genes Team

We’re led by a team of passionate people who strive to empower the rare disease community.
Get to know the Global Genes team.

Charlene Son Rigby


Nicole Boice

Founder & Chief Mission Officer

Mackenzie Abramson

Senior Manager, Research Programs Communications

Lauren Alford

Senior Director, Marketing & Communications

Rachel Barron

Senior Manager, Health Equity

Shannon Bennett

RARE Concierge Patient Navigator

Shelby Carney

Program Manager

Ashley Collier

Program Coordinator

Tina Dang

Research Associate

Daniel DeFabio

Director, Community Engagement

Nick Ehly

Associate Data Analyst

Tim Ehrhard

Senior Director, IT

Mindy Gikas

Human Resources Advisor

Jade Gosar

Intern, Data Analytics

Tudor Groza

Senior Research Fellow

Lisa James

Director, Data Science and Insights

Catherine Jordan

Bethany Kraynack

Finance and Operations Lead

Cynthia Kuan

Director, Program Operations

Daniel Levine

Life Sciences Writer

Katherine Lim

Associate Director, Marketing & Communications

Lauren McCabe

Associate, Marketing & Communications

Sravanthi Meka

Senior Manager, Content Marketing

Bridget Michaels

Associate, RARE-X Community Engagement

Shruti Mitkus, Ph.D.

Director, Patient Services

Kathy O’Connor

Senior Director, Corporate Engagement

Katelyn Peters

Senior Manager, RARE-X Community Engagement

Shankar Ramkellawan

Manager, Data Science and Insights

Nikki Richards

Senior Manager, Brand

Andrea Rogers

Project Lead

Reneiry Santiago

Associate, Programs & Events

T Schad

Clinical Research Network Assistant

Kristin Soto

Associate Director, Development

Zohreh Talebizadeh, PhD

Senior Director, RARE-X Research Program

Pam Todd

Educational Resource Strategist

Karmen Trzupek, MS, CGC

Senior Director of Scientific Programs

Ugochukwu “Ugo” Ugwuowo, MD

Data Analyst

Vanessa Vogel-Farley

Senior Director of Research and Data Analytics

Teneasha Washington, PhD, MPH

Diversity, Equity, & Inclusion Lead

Barry Weber, CIPP/US, CISM, ITIL

Data Protection Officer(DPA)/Chief Information Security Officer (CISO)

Victoria Weiss

Senior Director, Finance

Kelly Wentworth

Associate Manager, RARE-X Research Programs

Michele Whiteside

Director, Programs & Events

Board of Directors

Betsy Bogard

Head of Program and Alliance Managemen, Ensoma

Nicole Boice

Founder & Chief Mission Officer

Khyrstal Davis

Chief Data Officer, Office of Digital Transformation

Ilana Fogelman, MD, MPH


Simon Frost

CEO, Tiber Capital Group

Peter Goodhand

CEO, Global Alliance for Genomics & Health

Christina Hartman

Senior Director, Government Affairs, Orchard Therapeutics

Hugh Hempel

Co-Founder, Solution Therapeutics

Ram Iyer

Chief Data Officer, Digital Transformation, FDA

Walt Kowtoniuk, PhD

Venture Partner, Third Rock Ventures, Board Chairman

Neil Kumar, MS, PhD

CEO & Founder, BridgeBio

Caroline Loewy

Katherine Maynard


Indu Navar

CEO and Founder, EverythingALS

David Pearce, PhD

President of Innovation & Research, Sanford Health Systems

John Reynders, PhD

Chief Technology Officer, Neuromora Therapeutics

Morrie Ruffin

Co-founder and Board Member, ARM Foundation for Cell & Gene Medicine

Alvin Shih, MD

President & CEO, Catamaran Bio

Scientific Advisory Board

Sukirti “Suki” Bagal, MD, MPH

Vertex Pharmaceuticals

Dan Chung, DO, MA


Wendy Chung, MD

Columbia University

Scott Demarest, MD

Children’s Hospital Colorado

Ilana Fogelman, MD, MPH


Rachel Groth, PhD


Jeannette McCarthy, MPH, PhD

Precision Medicine Advisors

Tim Miller, PhD

Forge Biologics

David Pearce, PhD

President of Innovation & Research, Sanford Health Systems

Steve Rodems, PhD

Travere Therapeutics

Eric Sid MD

NIH, National Center for Advancing Translational Sciences

Alison Skrinar, PhD


Audrey Thurm, Phd

National Institute of Mental Health (NIMH)

Ashley Winslow, PhD

Odylia Therapeutics

RARE Health Equity Leadership Council

The RARE Health Equity Leadership Council is focused on building a more equitable paradigm for access, care, and research for the rare disease community.  Council members are instrumental in informing and guiding Global Genes programs, content, advocacy efforts, and  capacity building for patient organizations.

Royze Cachero

Global Liver Institute

Mary McGowan

Foundation for Sarcoidosis Research

Isaac Rodriguez-Chavez, PhD, MHSc, MSc

ICON plc

Rodney Samaco, PhD

Baylor College of Medicine

Global Advocacy Alliance Leadership Council

The Global Advocacy Alliance Leadership Council serves as a voice for the advocacy community and works with the Global Genes’ leadership, board, Corporate Alliance Leadership Council, and other partners to help shape, prioritize and drive strategic initiatives in support of our shared mission. If you have any questions, email [email protected].

Lara Bloom

President & CEO of The Ehlers-Danlos Society

Brad Crittenden

Canadian Association of Pompe

Sarita Edwards


Parvathy Krishnan

Krishnan Family Foundation

Allyson Lock

New Zealand Pompe Network

Kim McLellan

Recurrent Respiratory Papillomatosis Foundation

Deb Murphy

HypoPARAthyroidism Association, Inc.

James O’Brien

International Prader-Wili Syndrome Organization (IPWSO)

Kris Pierce

SCN2A Asia-Pacific

Atif Qureshi

Lysosomal Storage Disorders Society

Katie Sacra

Global Foundation for Peroxisomal Disorders

Tamara Schryver

Thrive with Pyruvate Kinase Deficiency Organization

Want to get involved or join the Global Genes team?

Email us at [email protected].