Rare Disease Registry | Sanford Research

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.

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Learn More About CoRDS

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. VIDEO: How to fill out the activation form.
Complete the questionnaire to become fully enrolled. You will be asked to update this information annually. VIDEO: How to fill out the questionnaire.
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.

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Access Request Form

If you are a researcher interested in accessing de-identifiable data in the CoRDS Registry or looking to have CoRDS contact participants on your behalf for a clinical trial or study, please download and complete the CoRDS Researcher Access Request Form and return it to cords@sanfordhealth.org.

For questions. please email CoRDS at cords@sanfordhealth.org or call 877-658-9192.

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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 10/1/2024

21,126 Enrolled Participants
3,234 Rare Diseases
122 Partner Groups
50 US States + DC
105 Countries
145 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.

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Events

Great Plains Rare Disease Summit

Upcoming Events:

15th Annual Great Plains Rare Disease Summit

May 8th & 9th, 2025

Virtual or In Person Options

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.

Poster Webinar Series:

Conference Posters and Why you Need Them

How to Make and Present a Poster

Poster Template

Past Events:

14th Annual Great Plains Hybrid Rare Disease Summit

May 16-17, 2024

13th Annual Great Plains Hybrid Rare Disease Summit

May 11-12, 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.

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 the 10,000+ 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. Many monuments and public buildings around the world will be 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, the CoRDS team sponsors the lighting of both Falls Park and the Arc of Dreams during this particular 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 essential 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.

On February 29th, 2024, to celebrate this Rarer Rare Disease Day, the CoRDS team, along with Rare by Design, will also be having an event at the Overlook Café in downtown Sioux Falls. Check out this link to learn more: Rare Disease Day.

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.