NF Community Learning Needs Assessment Survey

Question Title

* 1. Please indicate your connection to NF and/or CTF:

I live with NF

Caregiver to someone living with NF

Unaffected volunteer or donor

NF Healthcare Provider

Other (please specify)

Question Title

* 2. Which of the following resources have you used and/or shared with others?

	Last 6 months	Last 1-2 years	Have not used but am aware it exists	Not aware of this resource
NF Forum Videos (CTF Resource Library under Educational Videos)	NF Forum Videos (CTF Resource Library under Educational Videos) Last 6 months	NF Forum Videos (CTF Resource Library under Educational Videos) Last 1-2 years	NF Forum Videos (CTF Resource Library under Educational Videos) Have not used but am aware it exists	NF Forum Videos (CTF Resource Library under Educational Videos) Not aware of this resource
Ask the Expert (Webinars)	Ask the Expert (Webinars) Last 6 months	Ask the Expert (Webinars) Last 1-2 years	Ask the Expert (Webinars) Have not used but am aware it exists	Ask the Expert (Webinars) Not aware of this resource
Resource Library (Print Materials )	Resource Library (Print Materials ) Last 6 months	Resource Library (Print Materials ) Last 1-2 years	Resource Library (Print Materials ) Have not used but am aware it exists	Resource Library (Print Materials ) Not aware of this resource
Ask Kate Facebook discussions (took place in 2016-17 via NF Moms Rock FB group)	Ask Kate Facebook discussions (took place in 2016-17 via NF Moms Rock FB group) Last 6 months	Ask Kate Facebook discussions (took place in 2016-17 via NF Moms Rock FB group) Last 1-2 years	Ask Kate Facebook discussions (took place in 2016-17 via NF Moms Rock FB group) Have not used but am aware it exists	Ask Kate Facebook discussions (took place in 2016-17 via NF Moms Rock FB group) Not aware of this resource
CTF Video Library & Youtube Channel (media library)	CTF Video Library & Youtube Channel (media library) Last 6 months	CTF Video Library & Youtube Channel (media library) Last 1-2 years	CTF Video Library & Youtube Channel (media library) Have not used but am aware it exists	CTF Video Library & Youtube Channel (media library) Not aware of this resource

Question Title

* 3. What is your preferred way to receive new information? (Select all that apply)

Email from CTF

Regular mailings from CTF national and regional offices

Social Media (CTF national and regional Facebook pages)

Live CTF Events (galas, fundraisers, walks, forum)

Printable materials from CTF website (handbooks, brochures, printable PDF's)

Video presentations and webinars

Other (please specify)

Question Title

* 4. For each of the following items please rate its usefulness to your NF education & support needs.

	Extremely useful	Somewhat useful	Not useful	N/A
Forum & Conference videos made available online	Forum & Conference videos made available online Extremely useful	Forum & Conference videos made available online Somewhat useful	Forum & Conference videos made available online Not useful	Forum & Conference videos made available online N/A
Ask the Expert Webinars	Ask the Expert Webinars Extremely useful	Ask the Expert Webinars Somewhat useful	Ask the Expert Webinars Not useful	Ask the Expert Webinars N/A
Resource Library at CTF website	Resource Library at CTF website Extremely useful	Resource Library at CTF website Somewhat useful	Resource Library at CTF website Not useful	Resource Library at CTF website N/A
Ask Kate sessions held on Facebook via NF Moms Rock	Ask Kate sessions held on Facebook via NF Moms Rock Extremely useful	Ask Kate sessions held on Facebook via NF Moms Rock Somewhat useful	Ask Kate sessions held on Facebook via NF Moms Rock Not useful	Ask Kate sessions held on Facebook via NF Moms Rock N/A
CTF Video Library/YouTube Channel	CTF Video Library/YouTube Channel Extremely useful	CTF Video Library/YouTube Channel Somewhat useful	CTF Video Library/YouTube Channel Not useful	CTF Video Library/YouTube Channel N/A

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* 5. Please provide specific comments about your above answers. If you selected "Not useful", please briefly explain why.

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* 6. Please indicate your interest in the following education resources:

	Very interested	Somewhat interested	Not interested at all
Live, online discussions with Kate on various NF topics.	Live, online discussions with Kate on various NF topics. Very interested	Live, online discussions with Kate on various NF topics. Somewhat interested	Live, online discussions with Kate on various NF topics. Not interested at all
Pre-recorded presentations by NF experts w/ the option to submit follow-up questions.	Pre-recorded presentations by NF experts w/ the option to submit follow-up questions. Very interested	Pre-recorded presentations by NF experts w/ the option to submit follow-up questions. Somewhat interested	Pre-recorded presentations by NF experts w/ the option to submit follow-up questions. Not interested at all
All presentations from CTF forums & conferences available for online viewing.	All presentations from CTF forums & conferences available for online viewing. Very interested	All presentations from CTF forums & conferences available for online viewing. Somewhat interested	All presentations from CTF forums & conferences available for online viewing. Not interested at all
Transcript of interviews with NF experts on specific topics.	Transcript of interviews with NF experts on specific topics. Very interested	Transcript of interviews with NF experts on specific topics. Somewhat interested	Transcript of interviews with NF experts on specific topics. Not interested at all
Expanded written educational materials such as downloadable PDF's on specific topics.	Expanded written educational materials such as downloadable PDF's on specific topics. Very interested	Expanded written educational materials such as downloadable PDF's on specific topics. Somewhat interested	Expanded written educational materials such as downloadable PDF's on specific topics. Not interested at all

Question Title

* 7. Please share any suggestions you have for other education tools CTF could offer the community. If you have seen something done well elsewhere please share that here.