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.
Learn More
Stay Connected
Social Media
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:
Stats
Enrollment Numbers & Metrics
We're growing. See how CoRDS has made an impact of rare diseases with updates on our progress.
Enrollment Numbers
Metrics as of 8/1/2022
- 15,599 Enrolled Participants
- 2,067 Rare Diseases
- 93 Partner Groups
- 50 US States + DC
- 91 Countries
- 47 Approved Research Studies
- 41,218 Patients Connected to Research Studies
- 7,953 Data Sets to Researchers
Podcast
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.
Events
Great Plains Rare Disease Summit
Upcoming Events:
12th Annual Great Plains Hybrid Rare Disease Summit
星期五,May 20th 2022 Scientific Day
Saturday, May 21st 2022 Family, Caregiver, Patient Advocacy Day
Virtual or In Person Options
For more information:https://research.sanfordhealth.org/classes-and-events/sanford-cords-great-plains-rare-disease-summit
Past Events:
The 11th Annual Virtual Great Plains Rare Disease Summit
November 18-19, 2021.
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 sharingYOURwork 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.
2022
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 2022. 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.
- 2月26日,苏福尔斯市中心,27th & 28th 2022
- Falls Park | Downtown Sioux Falls | February 26th, 27th & 28th 2022
Social Media Engagement
Help spread awareness for Rare Disease Day by sharingYOURwork 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 and Sanford Research on Facebook or Twitter using @SanfordCoRDS and @SanfordResearch.
Meet Our Partners
AMEN Support
American Multiple Endocrine Neoplasia Support, for people living with MEN1, 2A and 2B
Cornelia de Lange Syndrome (CdLS) Foundation
For people living with Cornelia de Lange Syndrome (CdLS)
Cure VCP Disease
For people living with diseases caused by a mutation of the Valosin Containing Protein (VCP) gene
Curing Retinal Blindness Foundation
For children whose vision is impaired due to CRB1 degenerative retinal disease
DNM1
A support group for DNM1 genetic mutation
HODA (Hypertrophic Olivary Degeneration Association)
HSAN1E
For people living with Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E)
Hypersomnia Foundation
For people living with idiopathic hypersomnia (IH) and related sleep disorders
Hypnic Jerk Sleep Myoclonus Support Group
International Foundation for Gastrointestinal Disorders (IFFGD)
For people living with IFFGD
Kawasaki Disease Foundation
For people living with Kawasaki disease (KD) or Kawasaki syndrome
Kawasaki Disease Foundation Australia
For people living with Kawasaki disease in Australia
Marinesco-Sjogren Syndrome Support Group
For people living with Marinesco-Sjogren Syndrome (MSS)
Noah’s Hope /Hope 4 Bridget
One in a Billion Foundation
For people living with an undiagnosed and rare disease who would benefit from personalized and genomic medicine
Recurrent Respiratory Papillomatosis Foundation
For people living with Recurrent Respiratory Papillomatosis (RRP)
SPG15 Foundation
For people living with SPG15
Team Telomere
For people living with Dyskeratosis Congenita and Telomere Biology Disorders
Warburg Micro Research
Wiedemann-Steiner Syndrome Foundation
For people living with Wiedemann-Steiner syndrome (WSS)
Sanford Health News
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