Sanford Research to host Great Plains Rare Disease Summit
Contact:
Jon Berg
Sanford Health Media Relations
605-366-2432 / Jon.Berg@sanfordhealth.org
SIOUX FALLS, S.D., April 24, 2023 — Sanford Research will host the Sanford CoRDS 13th Annual Great Plains Rare Disease Summit May 11-12 in Sioux Falls. This year’s event theme is, ‘Rare Neurodevelopmental Disorders.’
Sanford’s Coordination of Rare Diseases at Sanford (CoRDS) is a centralized international patient registry for rare diseases, carriers of rare disease and those undiagnosed – coordinating the advancement of research into over 10,000 rare diseases.
David A. Pearce, PhD, president of research at Sanford Health, is also Chair of the International Rare Disease Research Consortium. Pearce and his team of researchers have a dedicated passion in rare disease research, affecting 1 in 10 people in the world.
“Each year we learn more about rare diseases and, unfortunately, learn about new rare diseases affecting people across the globe,” said David A. Pearce. “Each of the more than 10,000 rare diseases affects millions of people across the world. This annual event brings together incredible researchers and those affected by rare diseases to collaborate amongst one another. The goal of this year’s summit is to educate people on the advancements being made in the field of pediatric neurodevelopmental disorders and to talk about both clinical and research aspects of rare diseases.”
The summit kicks off Thursday afternoon with opening remarks from Ashish Gupta. Gupta is an assistant professor in the department of pediatrics at the University of Minnesota. Thursday’s session continues into the evening with presentations from rare disease advocates, Amber Freed and Allison Bones. Thursday’s sessions are open for patients, families and those in the community impacted by a rare disease.
The event continues all day Friday with a selection of nationally recognized speakers in the field of rare diseases.
Some of Friday’s speakers include, another presentation by Ashish Gupta; Dr. Zheng, group leader for National Center for Advancing Translational Sciences (NCATS); Sarah Goetz, assistant professor of pharmacology and cancer biology at Duke University; Stefan Barakat, professor in clinical genetics from the Netherlands; Dr. Marshall Summar, the Margaret O’Malley professor of genetic medicine and director of the rare disease institute at Children’s National Hospital in Washington, DC and Dr. Akos Herzeg, who specializes in fetal surgery, molecular therapies and gene therapies at University of California San Francisco.
Francisco Bustos and Hamlin Loukil will wrap up the two day summit with presentations about Sanford Research and its focus on rare diseases and its internal rare disease registry.
For more information about the summit visit Research.SanfordHealth.org keyword: Rare Disease Summit. To register, click here, email cords@sanfordhealth.org or call (877) 658-9192.
About Sanford Health
Sanford Health, the largest rural health system in the United States, is dedicated to transforming the health care experience and providing access to world-class health care in America’s heartland. Headquartered in Sioux Falls, South Dakota, the organization serves more than one million patients and 220,000 health plan members across 250,000 square miles. The integrated health system has 47 medical centers, 2,800 Sanford physicians and advanced practice providers, 170 clinical investigators and research scientists, more than 200 Good Samaritan Society senior care locations and world clinics in 8 countries around the globe. Learn more about Sanford Health’s commitment to shaping the future of rural health care across the lifespan at sanfordhealth.org or Sanford Health News.
