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Rare Disease Doctors Are Struggling. Here's 3 Ways Patients and Families Can Help.
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themighty.comIf you have been in the rare disease world for any length of time, you have likely heard of a rare disease expert who has closed their practice, retired from patient care, been pushed out of a larger organization, or opened a private pay clinic.
Experts like Dr. Korson dealing with mitochondrial disease, Dr. Afrin working with mast cell diseases, Dr. Boris and Dr. Schofield focusing on autonomic issues like POTS, and many others, have left, leaving even more patients without appropriate or even adequate care.
The sad part is that it is rarely the doctor’s choice to step back from rare disease patient care. Often, the rare disease doctor’s practice is seen as “too risky,” “too controversial,” or “not productive enough” because of long
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