The NBIA Disorders Association wants to hear from you!

Help us to identify the most pressing mental and physical health issues that NBIA patients and their caregivers face every day. Understanding you and your daily challenges can help us support you as we plan our family conference and set goals for the next five years. 

This survey is just 8 questions and should take less than 10 minutes to complete. The questions are designed to be thought-provoking and open-ended. Stories of personal struggles with NBIA and the impact it has on your life will help us set the priorities, so please feel free to elaborate and answer as many questions as you can.

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* 1. Connection to NBIA (optional)

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* 2. What are the top three most challenging aspects of life for the individual who has NBIA?

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* 3. What are the top three most challenging aspects of caring for a person with NBIA?

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* 4. What are the three most rewarding aspects of caring for an individual with NBIA?

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* 5. If you could speak to a room filled with NBIA experts about problems limiting quality of life and quality of care, what would you ask them to focus on?

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* 6. What products, services or innovations could be developed to improve life for individuals with NBIA in the next 1-5 years?

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* 7. What other additional questions or ideas you would you like to share?

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* 8. NBIA Families will be an integral part of the June 2019 NBIA Family Conference in Charleston, SC. Do you think you will be able to attend and actively participate in the meeting? (Yes / No / Maybe)

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* 9. Would you be interested in gathering with other NBIA individuals and families in your region outside of family conference events?

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* 10. First and Last Name (optional)

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* 11. Email address (optional)

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