Community Feedback Survey

Community Feedback Survey
Name

First NameLast Name
I am a:*

PatientPatient ParentPatient FamilyCaregiver
Pediatric or Adult Patient:*

PediatricAdult
Location:*

Street Address

Street Address Line 2

CityState / Province

Postal / Zip Code
Disease Type:*

FSGSMNIgANNSIgMC3GAPOL1MCDMPGNCNS/INSC1QOther
I see NephCure's resources as helpful, relevant, and accurate.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
NephCure has made it easier for me to manage and understand my condition.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
I understand how NephCure’s work is making an impact for patients like me.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
The education NephCure provides helps me make more informed decisions about my care.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
I know where to find information about NephCure events and programs.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
I would recommend NephCure to others affected by rare kidney disease.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
NephCure offers helpful written resources about my diagnosis.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
I feel part of a larger community after attending NephCure events.*

Strongly DisagreeDisagreeNeutralAgreeStrongly AgreeN/A
NephCure has helped me become an empowered patient.*

Strongly DisagreeDisagreeNeutralAgreeStrongly Agree
What kinds of events or topics would make you more likely to attend a NephCure event in the future? And what types of formats of events do you prefer (virtual/in-person, small or large events, volunteer or peer led events, etc.)?*
What kind of NephCure support has been the most helpful to you?*

Patient Navigation ServicesReading on the website/NephCure materialsFinding a nephrologist or specialistLearning about clinical trialsNavigating insurance or financial assistanceEmotional or peer supportHelp preparing for transplant or dialysisOpportunities to change kidney care through advocacy or legislative involvementHaven’t used NephCure for supportOther
What topics would you most like to learn more about?*

New treatment optionsClinical researchDaily kidney health and nutrition tipsEmotional and mental health resourcesTransitioning from pediatric to adult careNavigating rare disease insurance and coverageHow to get involved as a patient advocateOther
Overall, how satisfied are you with NephCure’s current programming, education and support?*

Very unsatisfiedUnsatisfiedNeutralSatisfiedVery satisfied
What’s one thing NephCure could do to better serve you?
Please share any additional thoughts, ideas, or experiences that would help us strengthen our programs and outreach
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