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
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.
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
Melissa Bryce Gamble
Global Foundation for Peroxisomal Disorders
After learning that her daughter, Ginny, was diagnosed with a peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), Melissa set out to find other parents facing a similar fate. What she found was a small community of parents corresponding via email and supporting one another as they navigated a lonely diagnosis. Melissa’s desire to raise funds for research, support families and promote awareness of PBD-ZSD led to the formation of the Global Foundation for Peroxisomal Disorders (GFPD). Melissa served as Treasurer of the GFPD from 2010-2015, then as Board Chair from 2016-2018. She now serves as executive director of the GFPD, overseeing staff and volunteers in Tulsa, Oklahoma. Her daughter, Ginny, passed away April 25, 2015, at the age of six-and-a-half from the degenerative effects of PBD-ZSD after a long and valiant battle. Along with her husband, Brant, Melissa strives to honor Ginny’s memory through her work with the GFPD and as an advocate for children and adults facing rare diseases.
Tamara Schryver
Thrive with Pyruvate Kinase Deficiency Organization
Applications are closed for the
2022-2024 term Leadership Council
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