Sanford CoRDS

Sanford CoRDS CoRDS is a centralized international patient registry for all rare diseases.

The Coordination of Rare Diseases at Sanford (CoRDS) registry is a national disease registry that includes all rare diseases. The CoRDS registry is headquartered at Sanford Research in Sioux Falls, South Dakota, and is supervised by Dr. David Pearce.

🚨 We’re Hiring! 🚨The CoRDS team is growing! We’re looking for passionate, detail-oriented professionals to help advance ...
08/27/2025

🚨 We’re Hiring! 🚨

The CoRDS team is growing! We’re looking for passionate, detail-oriented professionals to help advance rare disease research.

Research Project Manager
🔗 https://bit.ly/4lyyuX9

Associate Research Project Manager
🔗 https://bit.ly/4oO4I3F

Join us and make a real difference.

Kendra Gottsleben you are just the best and we are so honored to have you speak at our event and more importantly repres...
05/13/2025

Kendra Gottsleben you are just the best and we are so honored to have you speak at our event and more importantly represent the rare disease community.

Session 2 marked the close of the 15th Annual Great Plains Rare Disease Summit.Presentations were given by:🔹 Heather Fla...
05/09/2025

Session 2 marked the close of the 15th Annual Great Plains Rare Disease Summit.

Presentations were given by:
🔹 Heather Flanagan-Steet, PhD – Associate Director of Research, Greenwood Genetic Center
🔹 Scott Hebbring, PhD – Senior Research Scientist, Sanford Health, Marshfield Clinic Region
🔹 Laura Lambert, PhD – Director, Functional Omics Resource, Mayo Clinic
🔹 Keith A. Hansen, MD – Reproductive Endocrinologist, Sanford Health, Obstetrics & Gynecology

Thank you to all the speakers, attendees, and organizers who made this year’s summit a success.

The 15th Annual Great Plains Rare Disease Summit is off to a fantastic start! 🎉Session 1 included presentations from:🔹 R...
05/09/2025

The 15th Annual Great Plains Rare Disease Summit is off to a fantastic start! 🎉

Session 1 included presentations from:
🔹 Richard Steet, PhD – Director of Research, Greenwood Genetic Center
🔹 Kurt Warnhoff, PhD – Associate Scientist, Sanford Research
🔹 Kevin Francis, PhD – Associate Scientist, Sanford Research
🔹 Paul Orchard, MD – Professor, Department of Pediatrics, University of Minnesota
🔹 Hudson Freeze, PhD – Director, Children's Health Research Genetics Pediatrics, Sanford Burnham Prebys

Session 2 is up next—stay tuned!

THE WEEK IS FINALLY HERE! Join us for the 15th Annual Great Plains Rare Disease summit this week on Thursday and Friday,...
05/06/2025

THE WEEK IS FINALLY HERE!

Join us for the 15th Annual Great Plains Rare Disease summit this week on Thursday and Friday, May 8-9!

Thursday, May 8th, will be tailored towards patients, families, and advocacy groups. There will be a social following our speakers.

Friday, May 9th, will focus on Inborn Errors of Metabolism Research.

To register for this event, please visit:
https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

On this week's spotlight we would like to introduce Dr. Laura Lambert. Laura Lambert Ph.D. is an Associate Consultant I ...
04/30/2025

On this week's spotlight we would like to introduce Dr. Laura Lambert.

Laura Lambert Ph.D. is an Associate Consultant I in Physiology and Biomedical Engineering with joint appointments in Clinical Genomics and Biochemistry and Molecular Biology.

Dr. Lambert is Director of the Mayo Clinic Functional Omics Resource, a laboratory which designs and executes functional genomic studies across the institution, and co-investigator of the Minnesota Functional Omics Resource. She has extensive experience in the development of precision cell and animal models for the study of rare genetic diseases from her previous roles as Director of the UAB Transgenic and Genetically Engineered Model Systems Core, Co-Lead of the Disease Modeling Unit in the UAB Center for Precision Animal Modeling, and Director of Models and Therapeutics in the UAB Precision Medicine Institute. This includes the application of these models to determine both pathogenicity of genetic changes as well as the investigation of novel therapeutic strategies for addressing patient needs in these ultra-rare conditions.

Dr. Lambert's research focuses on the use of gene therapy and other n=1 therapeutic approaches (e.g., exon skipping, ribozymes, CRISPRa/CRISPRi, prime editing, base editing) for rare genetic conditions, with a focus on nanoparticle-based delivery platforms. Her research has been funded by multiple NIH grants as well as many foundation-based grants examining personalized medicine approaches, including her current work in n=1 nanoparticle mRNA delivery for the Wolverine Foundation in conjunction with Moderna.

We are one week away from our event! Don't forget to register below to hear amazing talks like Dr. Lamberts!

Registration Link: https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

On this week's spotlight, we would like to introduce Sharon King. Sharon is a passionate patient advocate who has united...
04/24/2025

On this week's spotlight, we would like to introduce Sharon King.

Sharon is a passionate patient advocate who has united public officials, researchers, biotech and industry representatives, and other patient advocates to catalyze rare disease treatment development and critical public policies.

Sharon is Senior Lead, Advocacy at Aldevron, a leading manufacturer of biologics headquartered in Fargo, North Dakota. There, she works to educate, connect, and improve understanding across the stakeholder community in the biotech space.

Using her experience from more than two decades of community service, Sharon co-founded and serves as president of Taylor's Tale, the organization named for her late daughter to raise awareness and funding for CLN1 disease research and advocate for the needs of rare disease patients. She is a state-appointed member of the North Carolina Advisory Council on Rare Diseases. The law that established the Council – the nation’s first – is named for her daughter. Sharon serves on the Emily Whitehead Foundation Board of Directors and as a Patient Ambassador for the Foundation for the National Institutes of Health.

Sharon received her bachelor’s degree from Meredith College in Raleigh, North Carolina and lives in Charlotte, North Carolina.

We are so exited to have Sharon share her journey and experience with us!

Register for the event today!
https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

Introducing this week's spotlight is Dr. Scott Hebbring. Dr. Hebbring works in the Center for Precision Medicine Researc...
04/15/2025

Introducing this week's spotlight is Dr. Scott Hebbring.

Dr. Hebbring works in the Center for Precision Medicine Research at Marshfield Clinic. Dr. Hebbring earned his doctorate at Mayo Clinic followed by a postdoctoral fellowship in UW-Madison’s Computational and Informatics in Biology and Medicine (CIBM) training program. His current research is multidisciplinary that combines statistical genetics and medical informatics with molecular biology.

To hear Dr. Hebbring along with other amazing speakers, please register here: https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

On this weeks spotlight, we would like to introduce Rachel Li M.D. MMS. Rachel Li, MD, is a double board-certified pedia...
04/08/2025

On this weeks spotlight, we would like to introduce Rachel Li M.D. MMS.

Rachel Li, MD, is a double board-certified pediatric clinical geneticist with a passion for helping patients with rare and undiagnosed diseases. She completed her medical training at Drexel University in Philadelphia, PA, followed by her residency at Virginia Commonwealth University in Richmond, VA, before joining Sanford Health four years ago. Dr. Li is particularly fascinated by the unique ways patients present with illness and believes that identifying an underlying diagnosis is essential for guiding effective treatment and management plans.

Please join us for the 15th Annual Great Plains Rare Disease Summit on May 8th to to hear from Dr. Li and many other amazing speakers!

Register for the event today!
https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

On this weeks spotlight, we would like to introduce Kendra GottslebenKendra has defined her life by a positive outlook a...
04/01/2025

On this weeks spotlight, we would like to introduce Kendra Gottsleben

Kendra has defined her life by a positive outlook and success in overcoming obstacles. Kendra refuses to be defined by Mucopolysaccharidosis (MPS)—the rare genetic condition she has had since birth. She enjoys a stylish outfit and shoes to match as she strives to make a difference. One of her favorite colors is yellow which embodies her life motto: When life hands you lemons, make the BEST lemonade possible!

Please join us for the 15th Annual Great Plains Rare Disease Summit on May 8th to to hear from Kendra and many other amazing speakers!

Registration Link: https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

On this weeks spotlight, we would like to introduce Sanford's Dr. Kurt Warnhoff, Ph.D. Kurt Warnhoff is an Associate Sci...
03/25/2025

On this weeks spotlight, we would like to introduce Sanford's Dr. Kurt Warnhoff, Ph.D.

Kurt Warnhoff is an Associate Scientist at Sanford Research in Sioux Falls, SD and is also affiliated with the Department of Pediatrics at the University of South Dakota Sanford School of Medicine. The Warnhoff Lab aims to understand the role our genes play in maintaining metabolic homeostasis. Operating at the intersection of genetics, molecular biology, and biochemistry, the Warnhoff Lab uses the pioneering organism Caenorhabditis elegans to define pathways that control metabolism of the essential molybdenum cofactor. The goal of the Warnhoff Lab is to generate fundamental knowledge that can be leveraged to improve the human condition.

You will not want to miss this!

Please join us for the 15th Annual Great Plains Rare Disease Summit on May 8-9 to to hear from Dr. Warnhoff and many other amazing speakers!

Registration Link:
https://app.smartsheet.com/b/form/79e31a61f4b7460f8479d3c6a8d4a9b6

Address

2301 E 60th Street N
Sioux Falls, SD
57104

Opening Hours

Monday 8am - 4:30pm
Tuesday 8am - 4:30pm
Wednesday 8am - 4:30pm
Thursday 8am - 4:30pm
Friday 8am - 4:30pm

Telephone

+18776589192

Website

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