The Global Advocacy Alliance is a vibrant community of nonprofit organizations and support groups from around the world working together to eliminate the burden of rare diseases.
The Global Advocacy Alliance Leadership Council serves as a voice of the advocacy community in working with Global Genes’ leadership, our board, partners and Corporate Alliance Leadership Council members to help shape, prioritize and drive strategic initiatives in support of our shared mission.
The 2025-27 council will focus on mentorship, capacity building, and collaboration to enhance the effectiveness of solving real-world problems, while also providing a space for these important conversations to take place. Council members will provide leadership within the rare disease patient advocacy ecosystem through mentorship and support to increase effectiveness and impact of groups, foster collaboration, and address the needs of patient and advocate communities globally.
We are grateful for these global leaders, who within their organizational and personal capacity have raised their hand to support other organizations and give direction to Global Genes, as we work to improve the lives of people around the world with rare diseases.
2025-2027 Leadership Council:
Jonathan Bracey, MVA Society
Amber Denton, NBIA Disorders Association
Sarita Edwards, E.We.Foundation
Barby Ingle, International Pain Foundation
Connie Lee, Psy.D., Alliance to Cure Cavernous Malformation
Megan Maack, Childhood Dementia Initiative
Lakeia Nard, Melanin Children Matter Inc
Christina O’Keeffe, Wiedemann-Steiner Syndrome Foundation
Isaac Okello, Raising Hope International Friends
Cheryl Petruk, Heal Canada
Michele Wise Wright, Ph.D., National Organization of African Americans with Cystic Fibrosis
Global Advocacy Alliance members meet during the Patient Advocacy Summit in San Diego, California
Stay Connected
Sign up for updates straight to your inbox.