(Wall Street Journal) – After an unthinkable diagnosis, a Journal editor learned how challenging it is to find treatment and support for a rare disease—and discovered reasons for hope.

I had come across chordoma during my late night internet research about tailbone pain some months back. It was a type of cancerous tumor that appears along the spine, including the sacrum. Tailbone pain is incredibly common, but there are only about 300 cases of chordoma a year in the U.S.—about one in a million people. I had dismissed the possibility for the same reason I don’t buy lottery tickets—the odds were ridiculously low. (Read More)