NESN is proud to celebrate Sanofi’s annual TORCH Awards, a program that showcases the exemplary work of the rare disease community and spotlights individual advocates who dedicate themselves to shining a light on rare diseases.
This year’s honorees embody resilience and hope — two mothers who are leaders advocating for rare disease parents by supporting them while they make tough decisions and helping families navigate rare disease clinical trials, a young man living with Gaucher disease on a mission to raise awareness and help foster future innovation through a career in medicine, an advocate for rare disease gene therapy, a cancer survivor using the power of sports to inspire others and an educator bringing diversity and inclusion to clinical trial design.
More than 25 million Americans are affected by rare diseases, which is roughly 1 in every 10 Americans,1 and they experience numerous and significant challenges on their disease journey.2 Sanofi believes that these individuals should not have to face their diseases alone and remains committed to finding ways to honor them and connect with each other. Sanofi encourages everyone to “Take Up the Torch” and do their part to support the rare disease community and NESN is up for the challenge.
“I am excited to recognize the strength and positive contributions of those living with rare diseases. The TORCH awards are an opportunity for us to come together and celebrate the impactful stories of our recipients. I am beyond proud of the remarkable leaders who work tirelessly to advocate for themselves and others every day,” said Duane Clark, General Manager of Rare Disease at Sanofi. “We’re so pleased to partner with the Boston Red Sox to celebrate these remarkable rare disease advocates!”
References:
1. NIH. Genetic and Rare Disease Information Center. FAQs About Rare Diseases. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases. Accessed August 16, 2022.
2. Bogart, K. R., & Irvin, V. L. (2017). Health-related quality of life among adults with diverse rare disorders. Orphanet journal of rare diseases, 12(1), 177. https://doi.org/10.1186/s13023-017-0730-1
MAT-US-2206127-v1.0-08/2022
