Coordination of Rare Diseases at Sanford (CoRDS)

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.

Rare Disease Day

Celebrated the last day in February, see the events below.

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Learn more about CoRDS

Stay Connected


Great Plains Rare Disease Summit

Upcoming Events:

14th Annual Great Plains Hybrid Rare Disease Summit 

May 16th & 17th, 2024

Theme: Rare Cancers

Virtual or In Person Options


Event Page

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:

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.

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.


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