The Hard Part Is Not What We Thought It’d Be

When people learn what Sanfilippo syndrome is and that our 12-year-old son has it, their reactions are immediate. “Oh, I’m so sorry.” “I can’t even imagine.” “That must be so hard.” Sanfilippo is a devastating disease. There’s no way around that. It’s devastating to the child, feeling frustrated as…

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…