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 more than 10,000 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 5/1/2023
- 17,635 Enrolled Participants
- 2,177 Rare Diseases
- 99 Partner Groups
- 50 US States + DC
- 94 Countries
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
14th Annual Great Plains Hybrid Rare Disease Summit
TBD Spring 2024
The Annual Great Plains Rare Disease Summit is an annual event that brings together field experts, clinicians and community advocates to discuss the latest in Rare Disease Research and community support opportunities.
Virtual or In Person Options
13th Annual Great Plains Hybrid Rare Disease Summit
May 11th - 12th 2023
The 12th Annual Great Plains Hybrid Rare Disease Summit
May 20-21, 2022
The 11th Annual Virtual Great Plains Rare Disease Summit
November 18-19, 2021.
Watch Day 1 Webinar (November 18)
Watch Day 2 Webinar (November 19)
Rare Disease Day
Rare Disease Day is celebrated on the last day of February every year and is a special day for rare disease patients, researchers, and advocates. Rare Disease Day is celebrated in February, because it has a 'rare' number of days. There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity. The Coordination of Rare Diseases at Sanford takes part each year in the celebration. It brings together the entire community to highlight the challenges that people with rare diseases face. To add to the visibility of this cause, many monuments and public buildings around the world have been lit up in the Rare Disease Day colors - blue, green, pink, and purple - to show solidarity with those affected by rare diseases. In Sioux Falls, SD both Falls Park and the Arc of Dreams will be illuminated during this special time. Other initiatives to recognize Rare Disease Day include social media campaigns showing support with photo filters, quote cards and the hashtags below. On top of these activities, researchers and advocates also use this time to educate people about rare diseases so that more can become aware of them. These efforts are important for encouraging greater awareness about these conditions and increasing understanding among family members, peers, and healthcare providers so that individuals affected by a rare disease can receive the best possible care.
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. To download additional Rare Disease Day photo filters and other campaign materials, follow this link.
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
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
A support group for DNM1 genetic mutation
HODA (Hypertrophic Olivary Degeneration Association)
For people living with Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E)
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
Lambert-Eaton LEMS Family Association
For people living with Lambert-Eaton Myasthenic Syndrome
Marinesco-Sjogren Syndrome Support Group
For people living with Marinesco-Sjogren Syndrome (MSS)
Noah’s Hope /Hope 4 Bridget
For people living with CLN2 (Late Infantile) Batten disease.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)
For people living with SPG15
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
Quit smoking or using tobacco: A how-to for your healthQuitting means overcoming 2 obstacles: a physical addiction and a habit
Sanford shares insights on virtual care at Politico summitEvent includes executives from Google, Mayo Clinic, Moderna and The White House
Classes & Events
PROMISE Summer Programs
Tue 06/13/23 8:30 AM - Tue 06/13/23 4:00 PM
Eastern South Dakota Research Symposium
Wed 06/14/23 8:30 AM - Wed 06/14/23 4:30 PM
The Sanford Center, Dakota Room