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
E.We.Foundation
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
Brad Margus
Canadian Association of Pompe
Brad began working in the rare disease space in 2006 after being diagnosed with Pompe disease. He has led the Canadian Association of Pompe as president and executive director since 2012. Brad is a proponent of early diagnosis through awareness and programs like newborn screening, and a believer in community and collaboration.
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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