1. Neurofibromatosis Social Media Trends
February 2013
A study from:
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2. Neurofibromatosis Social Media Trends
Research Methodology and Info on Neurofibromatosis
Healthcare market research and strategic advisory firm Manhattan Research,
and online patient community network Inspire, in alliance with patient advocacy
organization Neurofibromatosis Network, partnered on a study to explore the
role of social media in the lives of neurofibromatosis patient and caregivers.
About the study
The study was conducted online among 161 patients and 57 caregivers from
the Inspire/Neurofibromatosis Network’s Support Community
(http://www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012.
Neurofibromatosis (NF) is an incurable genetic disorder of the nervous
About
COMPANY CONFIDENTIAL system which causes tumors to form on the nerves anywhere in the body at
Neurofibromatosis any time. NF is one of the most common genetic disorders in the United
States, affecting more than 100,000 Americans.

3. Overview of Surveyed Respondents
Which best describes you? What is your gender?
11%
29%
I have
74%
neurofibromatosis
Male
Female
89%
70%
I care for someone with
26%
neurofibromatosis
NF Patients NF Caregivers
N/A - 1%
Source: Neurofibromatosis Social Media Trends
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4. Overview of Surveyed Respondents
What is your age? How severe is your neurofibromatosis, or that of
the person you care for?
Under 18 1%
24%
19 to 24 8%
25 to 34 25%
Mild
Moderate
49%
35 to 44 15% Severe
Not sure
45 to 54 25%
55 to 64 20% 14%
65 or 12%
2%
older
NF Patients
N/A - 4% N/A - 1%
Source: Neurofibromatosis Social Media Trends
4

5. NF Patients Use NF-related Social Media for Info Gathering More than
Emotional Support
Which of the following reasons describe why you use online communities, social networks, message boards, or
blogs related to neurofibromatosis?
I wanted to read how others have managed a
63%
condition or treatment regimen
I think others can give me tips and ideas I cannot
52%
find elsewhere
I wanted to find differing opinions about a health “We can share the
47%
issue or treatment option
research we each have
been doing in our search
I wanted to connect with others for emotional
support
44% for a cure for NF. Even if
such cure has not been
found yet, the fact that
I wanted to see how other people rate or review a
22% there are so many of us
prescription drug
with NF that are not
I came across these websites when I am using a willing to give up in
17% this search is
search engine
encouraging!”
- Female NF Patient, 55
Other 7%
Source: Neurofibromatosis Social Media Trends
5

6. Patients with Moderate-to-severe NF Use Community for Wide Variety of
Reasons; Much More Likely to Seek Others’ Opinions on Rx drugs
Which of the following reasons describe why you use online communities, social networks, message boards, or
blogs related to neurofibromatosis?
I wanted to read how others have managed a 69%
condition or treatment regimen 47%
I think others can give me tips and ideas I 57%
cannot find elsewhere 29%
I wanted to find differing opinions about a 52%
health issue or treatment option 32%
I wanted to connect with others for emotional 50%
support 29%
I wanted to see how other people rate or 30%
review a prescription drug 5% Mod-sev NF Patients*
18% Mild NF Patients**
I came across these websites when I am
using a search engine 24%
9%
Other
5%
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.
** Patients who have been diagnosed with mild neurofibromatosis.
Source: Neurofibromatosis Social Media Trends
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7. Caregivers Fully Engaged in Supporting The Person They Care for
Which of the following things do you do for the person you care for who has neurofibromatosis?
Take them to medical appointments 93%
Look up information and resources for
91%
their support
Track their condition and/or medical
data
88% “I use these sites, such as
Mayo Clinic, to keep
informed about clinical
Make sure they are taking their trials, drugs, and
medication(s), as applicable, according 60% supplements of
to doctors recommendations
interest. I also look to see
what, as situations
evolve, we might expect in
Other 26% terms of our son's
prognosis.”
- Female NF Caregiver, 38
Among caregivers
Source: Neurofibromatosis Social Media Trends
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8. Search, General Health Sites, And Patient Advocacy Sites Lead Online
Sources of NF Info for NF Patients
Which of the following types of websites did you visit for health and treatment information related to
neurofibromatosis in the past 12 months?
Search engine 46%
General health website 28%
Patient advocacy website 25%
Government website 19%
Clinic or hospital website - local or… 19%
Disease or condition website 17%
Health channel of portal website 5%
Health section of news website 4% “Online communities show me what others
Health insurance website 4% are going through, they help keep me
updated on current NF1 topics, and also
Prescription drug website 3%
provide a place for me to release my feelings
Pharmacy website 2% with like-minded people.”
Pharmaceutical corporate website 1% - Male NF1 Patient, 28
Other 4%
None of the above 20%
Source: Neurofibromatosis Social Media Trends
8

9. Nearly All NF Patients Surveyed Belong to at Least One NF Online
Community; Only Three-quarters Use Them Regularly
How many online communities or networks do you How many online communities or networks do you
belong to for information and support related to regularly use (e.g., visit at least several times per month)
neurofibromatosis? for information and support related to
neurofibromatosis?
24%
55%
One 41% None
One
Two or more Two or more
41%
31%
NF Patients NF Patients
N/A - 4% N/A - 4%
Source: Neurofibromatosis Social Media Trends
9

10. More than Half of NF Patients Use NF-related Social Media at Least
Once per Week
How often do you use online communities, social networks, message boards, or blogs for information and
support related to neurofibromatosis?
Several times per day 13%
About once a day 18%
Several times per
11%
week
About once per week 11%
A few times a month 20%
About once per
4%
month “Having contact with other people that
A few times per year
have a rare disorder like NF2 gets one
12%
out of isolation. I don't know anyone in
About once per year 2%
my area that has NF2. Now I virtually
know many others who have similar
Never 5%
problems and experiences.”
- Female NF Patient, 49
Source: Neurofibromatosis Social Media Trends
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11. NF Patients over Age 45 Are More Likely to Use Social Media at
Least Weekly
How often do you use online communities, social networks, message boards, or blogs for information and
support related to neurofibromatosis?
13%
Several times per day
14%
10%
About once a day
27%
Several times per 11%
week 12% NF Patients <44
15% NF Patients 45+
About once per week
8%
26%
A few times a month
16%
About once per 5%
month 3%
11%
A few times per year
13%
3%
At least weekly
About once per year
3% Patients <44: 49%
6%
Never
4%
Patients 45+: 61%
Source: Neurofibromatosis Social Media Trends
11

12. NF Patients And Caregivers Are Consistent And Long-term Users of NF
Online Communities
Thinking of your use of online communities and networks for information and support related to
neurofibromatosis, which statement best describes you?
After I initially sign up for a community...
39%
I use it regularly on a long-term basis
46%
I use it regularly for a few weeks but then 24%
stop or only use it rarely
12%
10% NF Patients
I only use it when a medical situation occurs NF Caregivers
18%
15%
I rarely return to use it
14%
7%
Other
7%
Source: Neurofibromatosis Social Media Trends
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13. NF Patients over Age 45 Are Loyal Community Users Post Sign-up
Thinking of your use of online communities and networks for information and support related to
neurofibromatosis, which statement best describes you?
After I initially sign up for a community...
28%
I use it regularly on a long-term basis
53%
I use it regularly for a few weeks but then 38%
stop or only use it rarely
12%
15%
NF Patients <44
I only use it when a medical situation occurs
5% NF Patients 45+
13%
I rarely return to use it
18%
6%
Other
8%
Source: Neurofibromatosis Social Media Trends
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14. NF Patients under Age 44 Have Strongest Support from Family And Friends
When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I
care for, I have lots of support from my family and friends.
Top 2 Agree
43%
25%
Strongly agree
29%
21%
25%
30% 68%
Agree 55%
26%
42%
14%
Neither agree nor 22% NF Patients <44 NF Patients 45+
disagree 13%
NF Patients <44
16%
NF Patients 45+
8%
NF Caregivers <44
10%
Disagree NF Caregivers 45+
11%
55% 63%
16%
4%
4% NF Patients <44 N/A – 6%
Strongly disagree
5% NF Patients 45+ N/A – 9% NF Caregivers <44NF Caregivers 45+
NF Caregivers <44 N/A – 16%
NF Caregivers 45+ N/A – 5%
Source: Neurofibromatosis Social Media Trends
14

15. Patients with Moderate-to-severe NF More Likely to Report Online
Communities Are An Essential Resource
When it comes to dealing with and managing my neurofibromatosis, or the neurofibromatosis of the person I
care, online communities and social networks are an essential resource to me.
Top 2 Agree
16%
25%
32% Strongly agree
36% Agree
Neither agree nor disagree
Disagree 60%
Strongly disagree 47%
29%
26%
3% 5%
5% 3%
Mod-sev NF Patients* Mild NF Patients** Mod-sev NF Patients* NF Patients**
Mild
N/A – 5% N/A - 15%
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.
** Patients who have been diagnosed with mild neurofibromatosis.
Source: Neurofibromatosis Social Media Trends
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