NNPDF Community Survey

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.

Question Title

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

Other (please specify)

Question Title

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

Information about Niemann-Pick disease

Information about diagnosis and treatment options

Information about financial support services

Information about emotional support services

Information about current research and clinical trial/expanded access programs

Information about regulatory rules and decision making

Other (please specify)

Question Title

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

Question Title

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

Always (Attend every online event)

Almost always (Attend majority of online events)

Sometimes (Attend some online events)

Rarely (Almost never attend online events)

Never (Have never attended an online event)

Question Title

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

Extremely important

Very important

Somewhat important

Not so important

Not at important at all

Please provide any comments you might have on the importance of in-person events below

Question Title

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

Very useful

Useful

Somewhat useful

Not so useful

Not at all useful

NNPDF Community Survey

Question Title

* 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.

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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