Because rare disease patients have unique difficulties.
And, there are a lot of us in the United States; 30 million rare disease patients sharing 7,000 rare diseases.1
Besides Dercum’s disease I’ve also been diagnosed with MGUS, prurigo nodularis, during each of my 3 pregnancies, intrahepatic cholestasis of pregnancy, and lipedema (this last disease is not rare but worse, it’s estimated to affect up to 18 million women in the United States, mostly undiagnosed.) That is a lot of women with a disease that doesn’t officially yet have its own ICD-10 CM code.2
More…recently diagnosed with Sjögren’s syndrome.