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

Lauren Alford

Senior Director, Marketing & Communications

Rachel Barron

Senior Manager, Patient Programs

Nikki Berry

Senior Manager, Brand

Lara Bloom

Strategic Advisor

Shelby Carney

Program Manager

Mary Cobb

Program Director

Tina Dang

Research Associate

Daniel DeFabio

Director, Community Engagement

Maria Della Rocca, MS, PMP

Senior Director, Patient Services

Darlene Dorkin

Project Management

Nick Ehly

Program Coordinator

Tim Ehrhard

Senior Director, IT

Mindy Gikas

Human Resources Advisor

Jade Gosar

Intern, Data Analytics

Frieda Hernandez

Manager, Engagement Programs

Tom Hume

Marketing and Communications

Lisa James

Associate Director, Strategic Advancement

Bethany Kraynack

Finance and Operations Lead

Cynthia Kuan

Program Manager

Scarlett Leone

Project Manager, Events

Daniel Levine

Life Sciences Writer

Katherine Lim

Senior Manager, Digital Marketing

Irie Long

Senior Project Coordinator

Claire Macht

Program Manager

Sravanthi Meka

Senior Manager, Content Marketing

Patrice Melluso, CMP, HMCC

Director, Meeting & Events

Shruti Mitkus, PhD

Director, Genetic Education and Navigation

Mary Morlino

RARE Concierge Patient Services Manager

Adriana Nelson

Associate Marketing Manager

Megan O’Boyle

Patient Engagement Lead

Kathy O’Connor

Senior Director, Corporate Engagement

Effie Parks

Community Engagement Coordinator

Katelyn Peters

Marketing Coordinator

Shankar Ramkellawan

Manager, Data Science and Insights

Andrea Rogers

Project Lead

Kristin Soto

Associate Director, Development

Pam Todd

Educational Resource Strategist

Karmen Trzupek, MS, CGC

Senior Director of Scientific Programs

Vanessa Vogel-Farley

Research & Data Governance Lead

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

Board of Directors

Betsy Bogard

Head of Program and Alliance Managemen, Ensoma

Nicole Boice

Founder & Chief Mission Officer

Wendy Erler

VP of Patient Experience, Alexion Pharmaceuticals

Ilana Fogelman, MD

CEO, MiCure

Simon Frost

CEO, Tiber Capital Group

Peter Goodhand

CEO, Global Alliance for Genomics & Health

Christina Hartman

Hugh Hempel

Walt Kowtoniuk, PhD

Venture Partner, Third Rock Ventures

Neil Kumar

Caroline Loewy

Craig Martin

President, Chief Engagement Officer, Rithm Health

Katherine Maynard

Principal, PWR

Indu Navar

David Pearce, PhD

President of Innovation & Research, Sanford Health Systems

Peter J. Pellizzon

Board Chairman

Anthony Philippakis, MD, PhD

Chief Data Officer, Broad Institute of Harvard and MIT

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

Peter Goodhand

CEO, Global Alliance for Genomics & Health

Anthony Philippakis, MD, PhD

Chief Data Officer, Broad Institute of Harvard and MIT

Alvin Shih, MD

President & CEO, Catamaran Bio

Beth Anne Baber


Ayesha Khalid


Jimmy Lin

MD, Phd, MHS

Jeanette McCarthy


Tim Miller


Ethan Perlstein


Ian Phillips

PhD, Dsc

Inderpal Randhawa


Katherine Rauen


Rob Ring


Jeffrey Sherman


Ryan Taft


Keith Vaux


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.

Tammy Boyd

Black Women’s Health Imperative

Donna Cryer, JD

Global Liver Institute

Lauren Lee

NephCure Kidney International

Mary McGowan

Foundation for Sarcoidosis Research

Isaac Rodriguez-Chavez, PhD, MHSc, MSc

ICON plc

Rodney Samaco, PhD

Baylor College of Medicine

Linda Thomas Wade

Sickle Cell Association of Texas

Ahmar Zaidi, MD

Children’s Hospital of Michigan

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]

Allyson Lock

New Zealand Pompe Network

Atif Qureshi

Lysosomal Storage Disorders Society, Pakistan

Brad Margus

Canadian Association of Pompe

James O’Brien

Prader-Willi Association of Australia

Kris Pierce

Genetic Epilepsy Team Australia, SCN2A Australia

Lara Bloom

President & CEO of The Ehlers-Danlos Society

Melissa Bryce Gamble

Global Foundation for Peroxisomal Disorders

Want to get involved or join the Global Genes team?

Email us at [email protected]