Inspire CEO Brian Loew discusses findings from Neurofibromatosis Social Media Trends, a survey report from the Inspire/Neurofibromatosis Network Support Community.

1. NEUROFIBROMATOSIS SOCIAL MEDIA TRENDS
Brian Loew
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2. PARTNERS IN RARE AND GENETIC DISEASE

3. Neurofibromatosis (NF) is an incurable genetic disorder of the nervous
system which causes tumors to form on the nerves anywhere in the body at any time.
NF is one of the most common genetic disorders in the United States, affecting more
than 100,000 Americans.
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.
The study was conducted online among 161 patients and 57 caregivers from the
Inspire/Neurofibromatosis Network’s Support Community
(www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012.
NEUROFIBROMATOSIS SOCIAL MEDIA TRENDS
RESEARCH METHODOLOGY AND INFO ON NEUROFIBROMATOSIS
About
Neurofibromatosis
About the study

4. WHAT IS YOUR GENDER?WHICH BEST DESCRIBES YOU?
74%
26%
I have neurofibromatosis
Source: Neurofibromatosis Social Media Trends
MALE
FEMALE
NF
Patients
NF
Caregivers
71% 89%
29% 11%
Overview of Surveyed Respondents

5. Overview of Surveyed Respondents
HOW SEVERE IS YOUR
NEUROFIBROMATOSIS, OR THAT OF THE
PERSON YOU CARE FOR?
WHAT IS YOUR AGE?
Under 18
19 to 24
25 to 34
35 to 44
45 to 54
55 to 64
65 to older
1%
NF Patients
25%
15%
25%
20%
2%
Source: Neurofibromatosis Social Media Trends
Mild
Moderate
Severe
Not Sure
24%
49%
14%
12%

6. WHICH OF THE FOLLOWING REASONS DESCRIBE WHY YOU USE ONLINE COMMUNITIES,
SOCIAL NETWORKS, MESSAGE BOARDS, OR BLOGS RELATED TO NEUROFIBROMATOSIS?
“We can share the
research we each
have been doing in
our search for a
cure for NF. Even if
such cure has not
been found yet, the
fact that there are
so many of us with
NF that are not
willing to give up
in this search is
encouraging!”
- Female NF
Patient, 55
NF Patients Use NF-related Social Media for Info Gathering
More than Emotional Support
I wanted to read how others have managed
a condition or treatment regimen
I think others can give me tips and ideas
I cannot find elsewhere
I wanted to find differing opinions about a
health issue or treatment option
I wanted to connect with others for emotional
support
I wanted to see how other people rate or review
a prescription drug
I came across these websites when I am using a
search engine
Other
Source: Neurofibromatosis Social Media Trends
63%
52%
47%
44%
22%
17%
7%

7. WHICH OF THE FOLLOWING REASONS DESCRIBE WHY YOU USE ONLINE COMMUNITIES, SOCIAL
NETWORKS, MESSAGE BOARDS, OR BLOGS RELATED TO NEUROFIBROMATOSIS?
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.
** Patients who have been diagnosed with mild neurofibromatosis.
Patients with Moderate-to-severe NF Use Community for Wide
Variety of Reasons; Much More Likely to Seek Others’
Opinions on Rx drugs
I wanted to read how others have managed a
condition or treatment regimen
I think others can give me tips and ideas
I cannot find elsewhere
I wanted to find differing opinions about a
health issue or treatment option
I wanted to connect with others
for emotional support
I wanted to see how other people rate or
review a prescription drug
I came across these websites when
I am using a search engine
Other
Source: Neurofibromatosis Social Media Trends
Mod-sev NF Patients*
Mild NF Patients**
69%
47%
57%
29%
52%
32%
50%
29%
30%
5%
18%
24%
9%
5%

8. WHICH OF THE FOLLOWING TYPES OF WEBSITES DID YOU VISIT FOR HEALTH AND
TREATMENT INFORMATION RELATED TO NEUROFIBROMATOSIS IN THE PAST 12 MONTHS?
Search, General Health Sites, And Patient Advocacy Sites Lead
Online Sources of NF Info for NF Patients
Search engine
General health website
Patient advocacy website
Government website
Clinic or hospital website - local or national
Disease or condition website
Health channel of portal website
Health section of news website
Prescription drug website
Pharmacy website
Pharmaceutical corporate website
Other
None of the above
Health insurance website
46%
28%
25%
19%
19%
17%
5%
4%
4%
3%
2%
1%
20%
4%
“Online
communities show
me what others
are going through,
they help keep me
updated on
current NF1
topics, and also
provide a place for
me to release my
feelings with like-
minded people.”
- Male NF1
Patient, 28
Source: Neurofibromatosis Social Media Trends

9. 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...
NF Patients And Caregivers Are Consistent And Long-term
Users of NF Online Communities
Source: Neurofibromatosis Social Media Trends
I use it regularly on a
long-term basis
I use it regularly for a few weeks but
then stop or only use it rarely
I only use it when a medical
situation occurs
I rarely return to use it
Other
39%
46%
24%
12%
10%
18%
15%
14%
7%
7%
NF Patients
NF Caregivers

10. 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
NF Patients <44 N/A – 6%
NF Patients 45+ N/A – 9%
NF Caregivers <44 N/A – 16%
NF Caregivers 45+ N/A – 5%
NF Patients under Age 44 Have Strongest Support from
Family And Friends
Source: Neurofibromatosis Social Media Trends
Strongly agree
Agree
Neither agree
nor disagree
Disagree
Strongly disagree
NF Patients <44
NF Patients 45+
NF Caregivers <44
NF Caregivers 45+
43%
25%
29%
21%
25%
30%
26%
42%
8%
10%
11%
16%
4%
4%
5%
14%
22%
13%
16%
68% 55%
55% 63%
NF Patients
<44
NF Patients
45+
NF Caregivers
<44
NF Caregivers
45+

11. 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.
* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.
** Patients who have been diagnosed with mild neurofibromatosis.
TOP 2 AGREE
N/A – 5% N/A - 15%
Patients with Moderate-to-severe NF More Likely to Report
Online Communities Are An Essential Resource
Source: Neurofibromatosis Social Media Trends
5%
3%
27%
38%
26%
4%
6%
34%
38%
19%
Mod-severe
NF Patients*
Mild NF
Patients**
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
60% 47%
Mod-sev
NF Patients*
Mild NF
Patients**

12. * I use these sites, such as Mayo Clinic, to keep informed about clinical trials, drugs, and
supplements of interest. I also look to see what, as situations evolve, we might expect in
terms of our son's prognosis.
–Woman, 38, caregiver of son with NF
When you have NF, you feel like you are the only one in your hometown living with it. With
these resources I would never know what if anything is being done to find a cure.
–Woman with NF, 54
When I am feeling down and upset, these communities give me hope and strength to
continue on in my daily life and not to worry so much of what may or may not happen with
NF
–Woman with NF, 26

13. * Online communities show me what others are going through, they help keep me updated
on current NF1 topics, and also provide a place for me to release my feelings with like-
minded people.
–Man with NF1, 28
* We can share the research we each have been doing in our search for a cure for NF. Even
if such cure has not been found yet, the fact that there are so many of us with NF that are not
willing to give up in this search is encouraging!
–Woman with NF, 55
They give me valuable information regarding what to expect and what to look for
regarding my son’s medical issues. It also makes me not feel so isolated and gives me
opportunity to make a network of support for my son in the future.
–Woman, 35, caregiver of son with NF
* It helps, knowing that I am not the only one going through the things I deal with.
Sometimes I can help them feel better, and sometimes they can help me feel better.
–Male with NF, 31

14. Benefits of community for patients and
caregivers– especially those with rare and
genetic diseases
Find emotional and practical
support
Place to share their experiences
and knowledge, and help
themselves by helping others
Initiate and promote research
Find resources and high-quality
information