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

Pam Rattananont

Barry Weber

Hugh Hempel

Neil Kumar

Christina Hartman

Indu Navar

Alvin Shih

Peter Goodhand

Tim Miller

Nicole Boice

Lara Bloom

Isaac R. Rodriguez-Chavez

Mary McGowan

Rodney Samaco

Simon Frost

Royze Cachero

Wendy Erler

Betsy Bogard

Ilana Fogelman

Walt Kowtoniuk

Sukirti Suki Bagal

John Reynders

David Pearce

Wendy Chung

Morrie Ruffin

Scott Demarest

Rachel Groth

Dan Chung

Jeannette McCarthy

Eric Sid

Steve Rodems

Audrey Thurm

Ashley Winslow

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

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

The Marketing and Communications team at Global Genes is responsible for developing and executing strategic initiatives that raise awareness and support for rare diseases. This team creates compelling content, manages digital marketing campaigns, and fosters corporate partnerships to engage the rare disease community and promote advocacy efforts. Their work enhances the organization's brand visibility and connects with patients, caregivers, and clinical partners worldwide.

Marketing and Communications

The Patient Services and Support team at Global Genes is dedicated to empowering individuals affected by rare diseases through personalized guidance and resources. They provide comprehensive support services, including advocacy, educational materials, and strategic partnerships, to enhance the patient and caregiver experience within the rare disease community.

Patient Services 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

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 Leadership Team at Global Genes drives the organization's vision and strategy, fostering collaboration among patients, caregivers, and clinical partners in the rare disease community. They oversee development and marketing efforts, ensuring impactful advocacy and resources are effectively communicated and delivered to those in need. Through their leadership, the team works to enhance awareness and support for rare diseases on a global scale.

Leadership Team

Global Genes

Org chart

Board & advisors

Teams

Advisory and Council Roles

Marketing and Communications

Patient Services and Support

Research and Data Management

Community Engagement and Support

Leadership Team

Offices

Global Genes

Org chart

Board & advisors

Teams

Advisory and Council Roles

Marketing and Communications

Patient Services and Support

Research and Data Management

Community Engagement and Support

Leadership Team

Offices

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