How Necessary is Support When Dealing With a Rare Disease?

Support strategies are often implemented into care plans for patients and families affected by rare and complex disorders. Support can come in many ways, from a listening ear and offering understanding, to taking responsibility for care decisions, to being physically available to do chores and errands for the family affected. How important is support to the patient and family on the receiving end?
Please help RNE's research by taking a few minutes to answer the following survey questions. All answers are confidential. Thank you!, 

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* 1. What type of support is most important to you?

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* 2. How important to you that others understand your disease?

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* 3. On the average day, how supported do you feel by others?

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* 4. What would be a good support choice for you?

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* 5. Do you feel supported by your medical team?

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* 6. How important do you feel about being emotionally supported by your clinicians?

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* 7. Can you see a difference in your or your child's behavior after receiving support?

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* 8. Who provides you the most support?

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* 9. Do you have a pet?

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* 10. Do you feel there is something we should know about support?

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