Advisory Board

Advocacy Leadership

What is the Rare Global Advocacy Leadership Council?

The Global Genes RARE Global Advocacy Leadership Council serves as a voice for the advocacy community.

Our leaders will be working with Global Genes’ leadership, board, and other partners and the Corporate Alliance Leadership Council members to help shape, prioritize and drive strategic initiatives in support of our shared mission.

If you have any questions, please email [email protected].

Meet the RARE Global Advocacy
Leadership Team

Allyson Lock

New Zealand Pompe Network

Atif Qureshi

Lysosomal Storage Disorders Society

Brad Crittenden

Canadian Association of Pompe

Brad Margus

Canadian Association of Pompe

James O’Brien

International Prader-Wili Syndrome Organization (IPWSO)

Katie Sarca

Global Foundation for Peroxisomal Disorders

Kris Pierce

SCN2A Asia-Pacific

Lara Bloom

President & CEO of The Ehlers-Danlos Society

Melissa Bryce Gamble

Global Foundation for Peroxisomal Disorders

Tamara Schryver

Thrive with Pyruvate Kinase Deficiency Organization

Applications are closed for the
2022-2024 term Leadership Council

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