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.
Connect with CoRDS on Social Media
We enjoy connecting with the individuals and communities we serve. We're on Facebook and Twitter, where you can get the latest news on rare disease research and connect with registry users worldwide.
Find us on social media:
Enrollment Numbers & Metrics
We're growing. See how CoRDS has made an impact of rare diseases with updates on our progress.
Metrics as of 9/1/2021
- 12,894 Enrolled Participants
- 1,784 Rare Diseases
- 83 Partner Groups
- 50 US States + DC
- 78 Countries
- 47 Approved Research Studies
- 41,218 Patients Connected to Research Studies
- 7,953 Data Sets to Researchers
Listen to CoRDS Cast
Hear from the rare disease community with our monthly podcast, CoRDS Cast. In each episode, you will hear from researchers and advocates for rare disease patients. We highlight the groups we work with to create disease-specific questionnaires and showcase the exciting research going on for rare diseases around the world. Listen here or subscribe with your favorite podcase app.
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.
Check back soon for a link to register for the event.
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.
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.
Meet Our Partners
A support group for DNM1 genetic mutation
For people living with IFFGD
Kawasaki Disease Foundation Australia
For people living with Kawasaki disease in Australia
One in a Billion Foundation
For people living with an undiagnosed and rare disease who would benefit from personalized and genomic medicine
For people living with SPG15
Warburg Micro Research
Sanford Health News