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.

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Learn More

Resources for Rare Disease Patients

Join CoRDS to advance research for your rare disease. CoRDS is the largest, free international rare disease registry. It works to connect participants, advocacy groups and researchers in the field.

Enroll in CoRDS to share your health story with researchers and clinicians around the globe and get information about research that’s relevant to you. Watch the video to hear from real participants and researchers about their experiences with CoRDS.

Ready to enroll? Complete your activation form below.

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How to Enroll in CoRDS

By choosing to participate in CoRDS, you’ll share important pieces of your health story with researchers and clinicians around the world. In turn, we will alert you about research that’s relevant to you.

What to expect:

Complete the enrollment activation form and review the informed consent.
Complete the questionnaire to become fully enrolled. You will be asked to update this information annually.
Anticipate being contacted for potential research and clinical trial opportunities.

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Update Your Profile

The information you contribute to the CoRDS registry is intended to be updated over time so that researchers can piece together a clear picture of how a disease progresses. Are you experiencing new symptoms? Have you started a new medication? Make sure we know about any changes. When your profile is up to date, we can send you information that best matches your condition.

Update Now

Video Instructions for Enrollment

Are you interested in the CoRDS Registry?

Learn how to fill out the activation form to get the enrollment process started.

Completing the CoRDS Standard Questionnaire

Enrolled participants will be given the opportunity to complete the CoRDS standard questionnaire along with disease specific questionnaires. This video tutorial will demonstrate how to access the participant portal and take a closer look at a few features within the portal.

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 2/1/2023

17,169 Enrolled Participants
2,157 Rare Diseases
97 Partner Groups
50 US States + DC
94 Countries

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.

Listen Now

Events

Great Plains Rare Disease Summit

Upcoming Events:

13th Annual Great Plains Hybrid Rare Disease Summit

Friday, May 12th, 2023, Scientific Day

Saturday, May 13th, 2023, 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 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.

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?

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.