Sunday, October 27, 2013

CORDS : Coordination of Rare Diseases at Sanford

 

Not to be confused with ‘Stanford University School of Medicine, CORDS offers a centralized web site for patients with Rare Diseases, and Researchers in the field of rare diseases.

  Register Here

Mission statement, as stated on web site.

At Sanford Research, we are committed to finding cures and advancing therapies for rare diseases. There are approximately 7,000 rare diseases affecting 25 million Americans and 350 million people worldwide. Many new developments in the diagnosis and treatment of human disease rely on research that involves the collection and analysis of data, but research into rare diseases is challenging due to a lack of information, the low numbers and geographic spread of individuals affected by rare disease, and data collected and stored in separate databases. To help address these challenges and advance research into rare diseases, we established the Coordination of Rare Diseases at Sanford (CoRDS).

Click here to view CoRDS Metrics & a list of diseases represented in CoRDS.

These diseases, although serious with morbidity and mortality are rare and often do not qualify for research grants because there are so few patients with each of these diseases.

The aims of the Affordable Care Act may optimize treatment for these rare diseases.  As the Affordable Care Act rolls out we will see how well it addresses this challenge.  Will it affect the number of children and adults who are not eligible for  health insurance.?

Activities such as this from a small rural hospital system in South Dakota do much to illuminate the  research, progress and patient advocacy for rare diseases. It was originally founded to fund raise for Breast Cancer by  Mr. Denny Sanford.

T. Denny Sanford

In 2007, Mr. Sanford made history with his gift of $400 million to Sanford Health—the largest donation ever to a health care organization.

 

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