When we are born with rare conditions, doctors often jump at the chance to examine what they have never seen in person before and may never see again. The excitement and fascination of being able to study something rare often leads to intrusive examinations without explanation of the benefits (if any) to the person being examined. This week we had a panel on to discuss the experience of being studied rather than being examined. Join us for an important discussion on the subject matter and lend your voice to the conversation.

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