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.

For Researchers: Access the CoRDs Registry

If you’re a researcher with IRB approval and are interested in accessing the CoRDS Registry, please contact the CoRDS team directly to complete the Access Form.
Email: cords@sanfordhealth.org 

 

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Rare Disease Day 2021

Sunday, February 28

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Events

Great Plains Rare Disease Summit

The Great Plains Rare Disease Summit is an annual event focused on rare disease research and advocacy.

Check back soon for more information about the 2021 event!

Rare Disease Day

2021

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?
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    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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