We invite you to take part in a brief survey to highlight some of the key issues that are important to members of the NPD community. Your responses will help NNPDF develop a better understanding of the issues that are most important to you and your family. Responses will be used to help NNPDF identify the priorities and areas of unmet need in planning for development of new support programs and resources for families at every stage of the NPD journey. In addition to your response, we also invite you to share your thoughts regarding our programs and services and how we can best meet your needs in the months and year ahead.

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* 1. How helpful do you find the following NNPDF services with (5) being very helpful and (1) being not helpful at all? If you do not have any experience with the program, select N/A.

  (1) Not helpful at all (2) (3) (4) (5) Very helpful  N/A
Emergency Hardship Program
Community Connections & Coffee Webinars
Community Webinars with Advocacy and Industry Partners
Family Support & Medical Conference
Community Newsletters
Patient/Family Experience Stories
Newly diagnosed services
Patient advocacy
Niemann-Pick disease advocacy
Family services consultations
Bereavement services
Legacy connections programs

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* 2. In what areas would you like to see NNPDF provide more information/services? Check all that apply.

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* 3. If possible, please briefly describe the type of information you feel would be helpful based on your responses above. 

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* 4. How often do you attend NNPDF virtual events/webinars?

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* 5. How important do you feel it is to have in-person meetings and events for our community?

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* 6. How useful do you find our monthly newsletters?

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* 7. How can the NNPDF provide more or better support to Niemann-Pick patients and families?

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