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

Lara Bloom

President & CEO of The Ehlers-Danlos Society

Brad Crittenden

Canadian Association of Pompe

Sarita Edwards


Parvathy Krishnan

CEO, Krishnan Family Foundation

Deb Murphy

HypoPARAthyroidism Association, Inc.

Trudy Nyakambangwe

Founder, Child And Youth Care Zimbabwe

Brad Margus

Canadian Association of Pompe

Kris Pierce

SCN2A Asia-Pacific

Katie Sacra

Global Foundation for Peroxisomal Disorders

Applications are closed for the
2022-2024 term Leadership Council

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