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.
Learn More About CoRDS
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 11/1/2025
- 23,732 Enrolled Participants
- 3,509 Rare Diseases
- 130 Partner Groups
- 50 US States + DC
- 118 Countries
- 200 Created a Researcher Account With CoRDS
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.
CoRDS Events
Meet Our Partners
Acrodysostosis Support and Research
Alliance Against HMERF
For people affected by Hereditary Myopathy with Early Respiratory Failure.
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
Gila Connect
For people living with Adult Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), Brain abnormalities, neurodegeneration, and dysoteoscelerosis (BANDDOS), and Nasu Hakola.
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
ISMRD
For people living with Glycoprotein Storage Diseases.
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
LCC Foundation
For people diagnosed with Leukoencephalopathy with calcifications and cysts.
MANDKind Foundation
Marinesco-Sjogren Syndrome Support Group
For people living with Marinesco-Sjogren Syndrome (MSS)
Multiple System Atrophy United Research Consortium
Multiple System Atrophy United Research Consortium is a global consortium of charitable groups united in their dedication to fight Multiple System Atrophy (AMS/MSA).
Noah’s Hope /Hope 4 Bridget
NODCC
For individuals with disorders of the corpus callosum, their families and professionals
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
-
background-image
Two Sanford medical centers make 100 Great Hospitals list
Becker's Hospital Review honors hospitals for patient experience, safety and care -
background-image
Journaling can improve mental health and wellness
Writing down your thoughts once a day can help you gain control of your emotions
Classes & Events
-
background-image
Teen Science Café
Tue 02/03/26 5:30 PM - Tue 02/03/26 7:00 PM
-
background-image
Sanford PROMISE Biomedical Research Investigation Days
Mon 02/16/26 9:00 AM - Mon 02/16/26 4:00 PM
Sanford Research Center