Coordination of Rare Diseases at Sanford (CoRDS)

Coordination of Rare Diseases at Sanford (CoRDS)

Based at Sanford Research, a nonprofit research institution, CoRDS is a centralized international patient registry for all rare diseases.

We coordinate the advancement of research into 7,000 rare diseases. Here’s how:

  • We work with patient advocacy groups, individuals and researchers.
  • We capture health information from individuals with a rare diagnosis, undiagnosed patients, unaffected carriers or at-risk patients.
  • We connect researchers and patients and notify our participants of emerging clinical trials.
  • We make the registry accessible. Participants can enroll for free and researchers can access it for free.

Enroll Now

Rare Disease Day 2022

Monday, February 28

Learn More

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Stay Conected


Great Plains Rare Disease Summit

The 11th Annual Virtual Great Plains Rare Disease Summit

November 18-19, 2021

CoRDS will be hosting the annual summit virtually again this year with a focus on technologies for modeling rare diseases.

Register Now


Thursday, November 18th, 2021

Scientific Symposium


9:00 a.m. - Welcome Address

Benjamin Forred – Director, Clinical Research – Genetics & Genomics and the CoRDS Registry


9:10 a.m. - 9:55 a.m. (CST) - In Vitro Bioengineered 3D models for Modeling Rare Diseases

Danilo A. Tagle - Associate Director for Special Initiatives, Office of the Director University/Institution: National Center for Advancing Translational Sciences, NIH


9:55 a.m. - 10:40 a.m. (CST) - Using Dental Pulp Stem Cells for the Study of Rare Neurogenetic Disorders

Dr. Lawrence T. Reiter, Ph.D - Professor, Department of Neurology at the University of Tennessee Health Science Center


10:40 a.m. - 11:15 a.m. (CST) - Leveraging CRISPR in the mouse to study rare diseases

Dr. LJ Pilaz, Ph.D - Assistant Scientist, Sanford Research


11:15 a.m. - 11:30 a.m. (CST)

Poster Session


11:30 a.m. - 12:00 p.m. (CST)

Lunch Break

12:00 p.m. - 12:45 p.m. (CST) - Longitudinal characterization of the Cln8mnd-/- mouse model of CLN8 Batten Disease - fine motor performance, retinal degeneration, brain pathology and metabolic changes.

Kimmo Lehtimaki, PhD - MRI Scientist, Study Director at Charles River Discovery, Finland


12:45 p.m. - 1:20 p.m. (CST) - Development and application of BioID and how it unexpectedly revealed insights into diseases of the nuclear envelope

Kyle J. Roux, PhD - Scientist, Enabling Technologies Group, Sanford Research


1:20 p.m. - 1:35 p.m. (CST)

Poster Session


1:35 p.m. - 2:20 p.m. (CST) - Hiding in plain site: TDP43 isoforms in amyotrophic lateral sclerosis and frontotemporal dementia

Sami Barmada, M.D., Ph.D. - Associate Professor of Neurology, University of Michigan


2:20 p.m. - 3:05 p.m. (CST) - Optimizing gene delivery throughout specific brain circuits to model and treat neurodegenerative diseases

Jodi McBride, PhD - Associate Professor of Neuroscience at Oregon Health & Science University at Portland, Oregon


3:05 p.m. - 3:15 p.m. (CST)

Closing Remarks



Friday, November 19th, 2021

Community Day



9:00 a.m. - 9:10 a.m. (CST) Welcome Address

Benjamin Forred – Director, Clinical Research – Genetics & Genomics and the CoRDS Registry


9:10 a.m. - 9:50 a.m. (CST)

How to ramp a patient advocacy organization in 4 years

Nathan & Allison Peck - Cure VCP Disease - CEO and Treasurer


9:50 a.m. - 10:30 a.m. (CST)

Jean Campbell - Co-Founder, PPALS 


10:30 a.m. - 11:10 a.m. (CST)

Erica Barnes - Chloe Barnes Advisory Council on Rare Diseases


11:10 a.m. - 11:50 a.m. (CST)

DRSD: Protecting and Advocating for Individuals with Disabilities

Sean A. Hegyi, JD, Esq.


11:50 a.m. -12:00 p.m. CST

Closing remarks



CoRDS will draw a name at the end of the event, winner can select where they would like CoRDS to donate $100.00. You must still be in attendance at the end of the event for the drawing.

Rare Disease Day


Light-Up A Landmark

 To show support for rare diseases across the world the National Organization for Rare Disorders (NORD) is leading a Light-Up a Landmark campaign as focus of Rare Disease Day 2021.  CoRDS has organized for a few landmarks within the Sanford Health footprint to be illuminated in the rare disease day colors (Blue, Pink, Purple, and Green).  The list of landmarks with dates is below.  

  • Arc Of Dreams | Downtown Sioux Falls | February 27th & 28th 2021
  • Falls Park | Downtown Sioux Falls | February 28th 2021


Social Media Engagement

Help spread awareness for Rare Disease Day by sharing YOUR work with rare diseases and why Rare Disease Day is important to you! Select one [or all!] of the questions below to take part. 

  • What does Rare Disease Day mean to you?
  • What gives you hope?
  • Why is Rare Disease Day important to you?
  • Why are you involved with rare disease research?


    STEP ONE: Download and print the flyer(s). To download, click on the links above.

    STEP TWO: Write in your answer

    STEP THREE: Snap a photo of you (or a group) holding up your flyer

    STEP FOUR: Post the photo on your favorite social media channel using #RareDiseaseDay and #SanfordRare.  Tag CoRDS on Facebook or Twitter using @SanfordCoRDS.

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