We value your input and appreciate your taking the time to complete this short survey. Your feedback is important to us as we work to launch our Family Member/Care Partner Support Program. The purpose of this survey is to help us gauge interest in this program and to learn what is most important to the people who will participate.


Please feel free to reach out to our Emotional Wellness Director, Carol Gelbard, directly, with any questions you might have.

* Are you a family member or care partner to a person who has been diagnosed with GNE Myopathy?
* Are you interested in learning more about and possibly participating in NDF's Family Member/Care Partner Support Program?

We'd love your feedback. We created this survey to hear all about what's important to you. As always, we'll stay in touch and keep you posted on this and other news.

Education about GNE Myopathy
Not at all Interested
Very Interested
Feelings of exhaustion/burnout
Not at all Interested
Very Interested
Legislative and/or regulatory advocacy
Not at all Interested
Very Interested
Care Partner Peer-to-Peer/Mentor Program
Not at all Interested
Very Interested
Care partner self care
Not at all Interested
Very Interested
Assistive devices education and updates
Not at all Interested
Very Interested
Social events for family members/care partners
Not at all Interested
Very Interested
Social events for family members/care partners WITH PATIENTS
Not at all Interested
Very Interested
Please add any additional topics you would like:
0/250
Ideally, what would you like to get from and/or give to a Family Member/Care Partner Support Program?
0/250
In our attempt to find the day/time that will work for the most people possible, while taking many time zones into consideration, please let us know which of these days/times would work for you to join virtual Family Member/Care Partner meetings.
0/250
Please use this space to give us any additional input that you would like. This information will help us ensure that this program fulfills the needs of our community.
0/500
* Name
0/50
* Email Address
0/50
Country of Residence
0/50

Thank you again for your participation in our survey. We value and appreciate your input. We will be in touch with you again soon as we process the responses and work to create a meaningful program.