Press Releases

Global Genes Honors Leaders, Advocates, and Innovators in Rare Disease From Around the World

November 17, 2020

Global Genes Honors Leaders, Advocates, and Innovators in Rare Disease From Around the World at the 2020 RARE Champion of Hope Celebration

ALISO VIEJO, Calif.; Nov. 17, 2020 (Business Wire) – Global Genes, a leading rare disease patient advocacy organization, announces eight award recipients of diverse backgrounds and experiences through its annual Champion of Hope Awards, recognizing exceptional leaders and their efforts to inspire, advance progress, and create positive change for rare disease patients worldwide.

The challenges facing the rare disease community are extraordinary, even in the most ordinary of times, and 2020 has tested the resilience and determination of all patients, caregivers, advocates, and leaders in rare disease. This year, Global Genes honors a set of inspirational leaders whom have made a difference despite the odds, to the benefit of patients and caregivers around the world.

“We’re proud and grateful to celebrate these remarkable champions for the rare disease community, who offer hope to so many,” said Craig Martin, interim CEO of Global Genes. “We all need a little extra to keep us going these days, and the stories of these leaders will inspire you, whether you are part of the rare disease community or not.”

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. With more than a hundred nominees, these awardees were selected:

• Rising Star: Alexis Levine, Clinical Research Coordinator, Boston Children’s Hospital
• Rising Star: Oyindamola Adeniyi, Foundation for Neuromuscular Support Nigeria
• Advocacy: Individual – Anutin Charnvirakul, Deputy Prime Minister and Minister of Public Health, Thailand
• Advocacy: Organization – Fibromuscular Dysplasia Society of America
• Industry: Timothy Walbert, CEO, Horizon Therapeutics
• Science & Technology: Monkol Lek, Cure Rare Disease
• Medical Care & Treatment: Alex Kolevzon, M.D., Icahn School of Medicine at Mount Sinai

In addition, this year Global Genes is introducing a RARE Founder’s Award, honoring an individual for the founding of an impactful organization in the rare disease community. The inaugural recipient of this award is Nicole Boice, founder of Global Genes and cofounder of RARE-X, a nonprofit organization focused on enabling global sharing of rare disease patient data to accelerate diagnosis and progress toward rare disease treatments and cures.

“Success for founders comes from the dedicated work of many, especially in rare disease, where collaboration and a team approach are critical,” said Boice. “I am honored to receive this first Founder’s Award, and am excited that it will become an award to recognize future recipients that have created value in rare disease by being a trailblazer, by recognizing holes, gaps, and needs and then doing something about it.”

“It is an honor to be recognized by Global Genes as a RARE Champion honoree,” said Timothy Walbert, CEO of Horizon Therapeutics, an advocacy organization that supports rare and rheumatic conditions. “I applaud all that the organization has done and continues to do for the rare disease community, and I look forward to our ongoing partnership to address the challenges in the community as well as celebrate its successes.”

Alexis Levine said, “As someone who has personally been affected by rare disease, I am so intrinsically motivated to further the research that I sometimes forget about the impact of my work. Thank you, Global Genes, for reminding me that I am a RARE Champion of Hope; it is such an honor to have received this award!”

Global Genes is grateful for the support of event sponsors: Alliance for Regenerative Medicine, Ultragenyx, Taysha Gene Therapies, Ionis Pharmaceuticals, and Horizon Therapeutics. For more information, visit

About Global Genes

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower, and inspire the rare disease community. We provide hope for more than 400 million people affected by rare disease around the globe. To date, we’ve educated millions of people in more than 100 countries about rare disease, equipped patients and advocates with tools and resources, and provided hundreds of thousands of dollars in support for innovative patient impact programs. 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 the resource hub at