Sarcoid Research And Education Foundation

Sarcoid Research And Education Foundation The Sarcoid Research and Education Foundation supports Sarcoidosis research and education at the Uni

10/15/2017

University of Minnesota Sarcoid Team

Congratulations to the Sarcoidosis medical team at the University of Minnesota. They have been recognized by the World Association for Sarcoidosis and Other Granulomatous Diseases as a WASOG Sarcoidosis Clinic based on their commitment to meet the needs of Sarcoidosis patients.

05/01/2014

SARCOIDOSIS: THE SNOWFLAKE DISEASE
Sarcoidosis is often referred to as the 'snowflake' disease because patients may have so many different symptoms. Diagnosis is challenging and can be made even more difficult by intermittent inflammation in multiple organs. Nearly half of the Sarcoid Research and Education Foundation survey respondents indicated diagnosis took over 5 years. The respondents had an average of almost 3 organs involved. This included sufferers of Sarcoid of many types affecting the lungs, eyes, spinal cord, liver, lymph, brain, spleen, and other organs.

The University of Minnesota is doing important research to identify a Sarcoidosis marker(s) to aid the diagnosis, treatment, prognosis and perhaps even a cure. Your support of this research is needed for patients and their families in this fight against this disease.

12/31/2013

Research is Rare: Sarcoidosis is Not!

The National Institute of Health website lists over 230 categories of medical research spending totaling over $900B over the last 8 years, Sarcoidosis does not even make the list. A detailed look shows Sarcoidosis to be included within some of the categories representing a total of$7M dollars over the same time period, less than 0.001% for a disease which can affect 1 in 50 over their lifetime. I am not sure how to get Sarcoidosis on the list but it needs to be done. Being on the list with -$0- spending might be embarrassing but sometimes that is what it takes.

12/21/2013

Sarcoidosis: The Unknown Disease

Sarcoidosis may be unknown but it is not rare. Sarcoidosis is not a new disease but new diagnostic techniques and technologies (such as CT scans) have enabled improved detection. More than 1 in 10,000 people get the illness (annually) and while uncommon it can be fatal. Recent studies suggest that the overall lifetime risk of getting Sarcoidosis could be as high as 2% or more. These studies also confirm African-Americans (especially African-American women) are three or four times more susceptible to the disease, which could put their lifetime risk over 5%. These disease rates are clearly outside the range of being ‘rare’.

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