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government organization in the United States.
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Interview guide
| Tell me a little about yourself |
| Draw a picture of your family, tell me about it |
| Tell me when you found out you had (name of condition) |
| Take me through a typical school day |
| Describe a typical weekend day and its difference from weekdays |
| What will it be like when you’re older? What will change? |
| Tell me your advice for: a child who just found out they have (name of condition). Your family. Your friends. |
