Rare Disease Leaders Honored at the 2021 Global Genes RARE Champions of Hope Celebration

Awardees driving innovation, advocacy and change in the rare disease space

ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, announced its annual RARE Champions of Hope Awards, recognizing seven leaders and organizations for their inspiring work in the rare disease community. The awardees were recognized at the 2021 RARE Champions of Hope Celebration in Philadelphia on November 18.

Whether through a personal connection to rare disease or interest and work in the medical field, every one of this years’ groundbreaking recipients came into the rare disease space because they saw an opportunity to make positive change in a community that is faced with numerous challenges.

“We couldn’t be more grateful for and impressed by the work that these champions are doing for the rare disease community,” said Craig Martin, CEO of Global Genes. “It is an honor to recognize the incredible effort and change they are making in their communities and beyond every single day, embodying the mission of Global Genes of empowering the community to stand up, stand out and become effective advocates on their own behalf.”

This year, the celebration recognized those who made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders:

• Rising Star: Geoff Rhyne, CEO and Co-Founder, IDefine
• Medical Care and Treatment: Susan J. Hayflick, M.D., Oregon Health & Science University
• Science & Technology: Dr. Julie Greenfield, Head of Research, Ataxia UK
• Industry: Giacomo Chiesi, Head of Global Rare Diseases, The Chiesi Group
• Advocacy (Individual): Georgene’ Glass, Founder and Executive Director, Dreamsickle Kids Foundation, Inc.
• Advocacy (Foundation): The Desmoid Tumor Research Foundation
• Founder’s Award: Donna R. Cryer, Founder, President and CEO, Global Liver Institute

Global Genes is grateful for the support of the event sponsors: Vertex, Dicerna, BioCryst, Horizon, and Ultragenyx.

For more information on this program and the awardees, visit www.globalgenes.org.

About Global Genes

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.