The RARE Champion of Hope Award for Research & Science recognizes an individual who is moving the bar in rare disease research and science. Whether from academia, industry, the clinic or an advocacy group, this person works to advance research for a specific rare disease or is a key agent in the provision of tools and approaches to developing and/or delivering more effective treatments for the rare community.
Dr. Pearce serves as vice president of Sanford Research and director of Sanford Children’s Health Research Center. He is one of the world’s leading researchers of Batten disease and also established the Coordination of Rare Diseases at Sanford (CoRDS) program.
CoRDS is a national rare disease registry designed to accelerate research into these uncommon conditions. The program collects and stores basic contact and clinical information on individuals of any age who have been diagnosed with a rare disease (undiagnosed individuals are also eligible for enrollment).
His work with both Batten disease and CoRDS was highlighted in the nomination process.
“Rare diseases often create debilitating and sometimes fatal circumstances for those who suffer from them,” said Sanford Research President Gene Hoyme, MD. “Dr. Pearce’s work is incredibly important, and he is persistently laboring so that fewer children are affected by rare diseases. This honor is well deserved.”
Global Genes and the R.A.R.E. Project, which coordinates the Champion of Hope Award, represent the roughly 30 million Americans and approximately 350 million people worldwide who are affected by rare genetic diseases and disorders. In the United States, a disease is considered rare if it affects fewer than 200,000 people in the United States. According to the National Institutes of Health, there are nearly 7,000 such rare diseases and an estimated 95 percent do not have a single approved drug treatment. R.A.R.E. is an acronym for Rare Diseases Awareness Research Education.
The winner of the Champion of Hope award will be announced at the RARE Tribute to Champions of Hope Gala and Rare and Genetic Disease Patient Advocacy Summit on Sept. 27 and 28 at the Balboa Bay Club & Resort in Newport Beach, CA.
About Sanford Research/USD
Sanford Research/USD is a non-profit research organization formed between Sanford Health and the University of South Dakota. Sanford Health is an integrated health system headquartered in Fargo, ND and Sioux Falls, SD and represents the largest, rural, not-for-profit healthcare system in the nation with a presence in 111 communities, eight states and three countries. In 2007, a transformational gift of $400 million by Denny Sanford provided for an expansion of children’s and research initiatives, specifically finding a cure for type 1 diabetes, and has given Sanford Research significant momentum in its goal of becoming one of the premiere research institutions in the United States and the world. Most recently, a subsequent gift of $100 million by Mr. Sanford has paved the way to establish Edith Sanford Breast Cancer Research.
With a team of more than 200 researchers, Sanford Research comprises several research centers, including Children’s Health Research, Edith Sanford Breast Cancer, Cancer Biology, Cardiovascular Health, Center for Health Outcomes and Prevention, and the National Institute for Athletic Health and Performance (NIAHP).