Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare community of patients, caregivers, advocates, and clinical partners.

Non Profit

Global Genes

Global Genes' headquarters in Aliso Viejo, CA, United States

Charlene Son Rigby

Karmen Trzupek

Barry Weber

Mindy Gikas

Maria Della Rocca

Pam Rattananont

Hugh Hempel

Neil Kumar

Alvin Shih

Peter Goodhand

Tim Miller

Nicole Boice

Lara Bloom

Isaac R. Rodriguez-Chavez

Mary McGowan

Rodney Samaco

Simon Frost

Royze Cachero

Betsy Bogard

Ilana Fogelman

Walt Kowtoniuk

John Reynders

David Pearce

Wendy Chung

Morrie Ruffin

Scott Demarest

Rachel Groth

Dan Chung

Jeannette McCarthy

Eric Sid

Steve Rodems

Audrey Thurm

Dave Osterman

Tamara Schryver

Sarita Edwards

Brad Crittenden

Kim Mclellan

Deb Murphy

Katie Sarca

James O’brien

Kris Pierce

Atif Qureshi

Allyson Lock

Caroline Loewy

Christina Hartman

Indu Navar

Wendy Erler

Sukirti Suki Bagal

Ashley Winslow

The Advisory and Council Roles team at Global Genes provides expert guidance and strategic insights to enhance the organization's advocacy efforts for rare disease communities. Comprised of advisors and council members with diverse backgrounds in science, medicine, and patient advocacy, this team collaborates to inform policy, drive research initiatives, and improve resources for patients and caregivers, ultimately aiming to elevate the voices of those impacted by rare diseases on a global scale.

Advisory and Council Roles

This department provides strategic direction and oversees the overall management of the organization.

Leadership

This department provides expert guidance and strategic advice to support organizational objectives.

Advisory Services

The Community Engagement and Support team at Global Genes focuses on fostering connections between patients, caregivers, and advocates within the rare disease community. They develop and implement programs that enhance awareness, provide resources, and facilitate support networks to improve the quality of life for individuals affected by rare diseases. Through collaboration with stakeholders, the team aims to amplify patient voices and promote advocacy initiatives on a global scale.

Community Engagement and Support

The Research and Data Management team at Global Genes is responsible for coordinating and overseeing research initiatives related to rare diseases. They manage data collection, governance, and analysis to support evidence-based advocacy and improve patient outcomes. This team collaborates with various stakeholders, including patients and clinical partners, to drive impactful research and enhance insights into rare diseases.

Research and Data Management

This department provides high-level counsel and guidance on various strategic initiatives and human resources matters.

Strategic Advisory

Global Genes

Org chart

Board & advisors

Teams

Advisory and Council Roles

Leadership

Advisory Services

Community Engagement and Support

Research and Data Management

Strategic Advisory

Offices

Global Genes

Org chart

Board & advisors

Teams

Advisory and Council Roles

Leadership

Advisory Services

Community Engagement and Support

Research and Data Management

Strategic Advisory

Offices

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