#BIOSummit19: Education and Partnerships Raise Awareness

When Mark Dant’s son Ryan was first diagnosed with MPS-I, a rare genetic disorder that leads to organ damage, he had to buy a medical dictionary in order to decipher the words the doctors were saying to him.
“I didn’t understand the language of the scientists,” Dant recalled. “The key for every advocate is education. Once I was able to understand the basic terminology, I was able to ask the right questions. It’s not someone else’s responsibility to teach