Patient Education

“The diagnosis has unearthed some other conditions we had suspected we can now address. But on a personal level, it has become life changing. I had never met any other parents who are going through what we’re facing, and knowing others who can relate is a huge part of the journey with rare disease.”

“They were always realistic with us, but had such a positive attitude. They gave us hope, and now we have our little Kennedy.”

“Thinking about everything Kimyah and DJ have been through, it was hard to imagine us ever getting to this point. It was unclear if they would be able to do anything by themselves. Now, they’re trying to do everything by themselves.”