Section 1: About You

This survey is provided with the permission of Lemuel J Pelentsov, Andrea L Fielder, Thomas A Laws, and Adrian J Esterman. Personal information will not be shared without your permission.  Anonymized survey results will be provided to the research team who created the survey in order to support their work.

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* 1. Are you the mother or father of a child with a rare disease?

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* 2. How many of your children are affected by a rare disease?

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* 3. If you know, can you please tell us which rare disease(s) your child/children have? (please spell out in full)

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* 4. Have you been formerly diagnosed or suspected that you have a rare disease?

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* 5. What is your age?

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* 6. In what country do you currently reside?

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* 7. Where do you live?

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* 8. Marital status

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* 9. In what ZIP code is your home located? (enter 5-digit ZIP code; for example, 00544 or 94305)

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