Nephrogenic systemic fibrosis, a scleroderma-like condition, is related to the use of gadolinium in patients with severe renal failure. This dialysis patient developed nephrogenic systemic fibrosis just 3 months after being exposed to gadolinium for an MRA.
This is a disease that made local headlines in Tn.
Doctors want to pool their numbers and scientifically approach a rare disease to see if a treatment actually works (hence experiment).
Insurance companies are always loath to to pay for expensive experimental treatments for rare diseases.
Pharmaceutical companies also do not want to pay to get FDA labeling for a rare disease, though they will sometimes fund a small study to see if something will work.
The catch 22 of rare illnesses.
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