External Resources
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Steffens Scleroderma Foundation
Diagnosing rare and ultra-rare conditions like scleroderma and Degos disease can be challenging. Understand these vascular diseases.
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National Organization for Rare Disorders (Degos Disease page)
NORD (National Organization for Rare Disorders) has a page on Degos disease.
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Orphanet
Orphanet is a database dedicated to information on rare diseases and orphan drugs.
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National Institutes of Health (NIH)
The National Institutes of Health, commonly referred to as NIH, is the primary agency of the United States government responsible for biomedical and public health research.
NIH Referral Process Q&A
Download the PDF to learn how to pursue a referral to the NIH for Degos disease, potentially gaining access to specialized research and treatment options.
NIH Baricitinib Clinical Study
Download the PDF for a clear breakdown of eligibility requirements, what the study includes, and how to contact the NIH research team.
Laparoscopy Training Video
WARNING:
IMAGES AND TOPICS COVERED IN THIS VIDEO MAY BE CONSIDERED GRAPHIC TO SOME AUDIENCES. VIEWER DISCRETION IS ADVISED.
Kohlmeier Degos Advocacy in Rare Diseases Talk
WARNING:
IMAGES AND TOPICS COVERED IN THIS VIDEO MAY BE CONSIDERED GRAPHIC TO SOME AUDIENCES. VIEWER DISCRETION IS ADVISED.
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