Four million Californians have rare diseases. Let’s make miracles possible

Thursday, February 28, 2019

BY ROB BONTA SPECIAL TO THE SACRAMENTO BEE

FEBRUARY 28, 2019 11:16 AM

Around 30 million Americans, including nearly four million Californians, are affected by rare diseases. According to the National Organization for Rare Disorders, there are more than 7,000 of these conditions. Around half of rare disease patients are children.

If you know a family facing a rare disease, you’ve seen what they go through. Fighting one of these conditions is like having a second full-time job with the sole purpose of keeping a loved one alive. It often starts with a diagnostic odyssey, during which no one can figure out why their child is sick. This can go on for months or years...