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* 1. What is the name of your child's rare disease (both clinical and 'common' name)?  How long ago was he/she diagnosed?

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* 2. Is there someone in your life that shares the responsibility for caring for your child?  What are their roles [parent, grandparent, aunt/uncle, professional, etc]

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* 3. How do you prefer to communicate with other adults?

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* 4. On a scale of 1 to 10, how supported do you feel as a mother?

1 1 = Extremely Unsupported, 10 = Extremely Supported 10
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i We adjusted the number you entered based on the slider’s scale.

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* 5. Where do you hear about support services?

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* 6. What kinds of support have been most helpful to you as a mother?

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* 7. Self care is any activity that refuels us rather than takes from us. How much time do you spend on self care per week?

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* 8. Would you find participating in an online organized therapeutic support group geared towards moms like you beneficial?

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* 9. If resources were not an issue, what is the one thing someone could do or offer to you that would make you feel more supported as a mother of a child with a rare disease?

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* 10. Would you like us to know what other mothers had to say?  If you provide your info here, we can share the Survey Results with you. [Names remain anonymous to other respondents.]

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