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Neurofibromatosis Social Media Trends February 2013 Unauthorized use, redistribution and reproduction are strictly prohibited without express written permission from Manhattan Research, LLC Copyright © 2013 Manhattan Research, LLC. All rights reserved. A study from:

Neurofibromatosis Social Media Trends

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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 in Q2 2012. See below for an Inforgraphic and presentation from the study.

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Page 1: Neurofibromatosis Social Media Trends

Neurofibromatosis Social Media TrendsFebruary 2013

Unauthorized use, redistribution and reproduction are strictly prohibited without express written permission from Manhattan Research, LLC

Copyright © 2013 Manhattan Research, LLC. All rights reserved.

A study from:

Page 2: Neurofibromatosis Social Media Trends

COMPANY CONFIDENTIALAbout Neurofibromatosis

About Neurofibromatosis

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.

About the studyAbout the study

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(http://www.inspire.com/groups/neurofibromatosis-network/) in Q2 2012.

Neurofibromatosis Social Media TrendsResearch Methodology and Info on Neurofibromatosis

Page 3: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

Which best describes you?

Overview of Surveyed Respondents

I have neurofibromatosis

I care for someone with neurofibromatosis

74%

26%

What is your gender?

NF Patients NF Caregivers

70%

89%

29%

11%

MaleFemale

N/A - 1%

Page 4: Neurofibromatosis Social Media Trends

4

Under 18

19 to 24

25 to 34

35 to 44

45 to 54

55 to 64

65 or older

1%

8%

25%

15%

25%

20%

2%

Source: Neurofibromatosis Social Media Trends

What is your age? How severe is your neurofibromatosis, or that of the person you care for?

Overview of Surveyed Respondents

NF Patients

12%

14%

49%

24%

MildModerateSevereNot sure

N/A - 1%N/A - 4%

Page 5: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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 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

63%

52%

47%

44%

22%

17%

7%

“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

Page 6: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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 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

69%

57%

52%

50%

30%

18%

9%

47%

29%

32%

29%

5%

24%

5%

Mild NF Patients**Mod-sev NF Patients*

* Patients who have been diagnosed with moderate to severe (Mod-sev) neurofibromatosis.** Patients who have been diagnosed with mild neurofibromatosis.

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Source: Neurofibromatosis Social Media Trends

Take them to medical appointments

Look up information and resources for their support

Track their condition and/or medical data

Make sure they are taking their medication(s), as applicable, according to doctors recommendations

Other

93%

91%

88%

60%

26%

Which of the following things do you do for the person you care for who has neurofibromatosis?

Caregivers Fully Engaged in Supporting The Person They Care for

Among caregivers

“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.”- Female NF Caregiver, 38

Page 8: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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

Health insurance website

Prescription drug website

Pharmacy website

Pharmaceutical corporate website

Other

None of the above

46%

28%

25%

19%

19%

17%

5%

4%

4%

3%

2%

1%

4%

20%

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

“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

Page 9: Neurofibromatosis Social Media Trends

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Nearly All NF Patients Surveyed Belong to at Least One NF Online Community; Only Three-quarters Use Them Regularly

Source: Neurofibromatosis Social Media Trends

How many online communities or networks do you belong to for information and support related to neurofibromatosis?

NF Patients

41%

55%

One

Two or more

How many online communities or networks do you regularly use (e.g., visit at least several times per month) for information and support related to neurofibromatosis?

NF Patients

31%

41%

24%

NoneOneTwo or more

N/A - 4%N/A - 4%

Page 10: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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

About once a day

Several times per week

About once per week

A few times a month

About once per month

A few times per year

About once per year

Never

13%

18%

11%

11%

20%

4%

12%

2%

5%

“Having contact with other people that have a rare disorder like NF2 gets one out of isolation. I don't know anyone in my area that has NF2. Now I virtually know many others who have similar problems and experiences.”- Female NF Patient, 49

Page 11: Neurofibromatosis Social Media Trends

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Several times per day

About once a day

Several times per week

About once per week

A few times a month

About once per month

A few times per year

About once per year

Never

13%

10%

11%

15%

26%

5%

11%

3%

6%

14%

27%

12%

8%

16%

3%

13%

3%

4%

NF Patients 45+

NF Patients <44

At least weekly

Patients 45+: 61%

Source: Neurofibromatosis Social Media Trends

How often do you use online communities, social networks, message boards, or blogs for information and support related to neurofibromatosis?

NF Patients over Age 45 Are More Likely to Use Social Media at Least Weekly

Patients <44: 49%

Page 12: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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...

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%

24%

10%

15%

7%

46%

12%

18%

14%

7%

NF Caregivers

NF Patients

Page 13: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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...

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

28%

38%

15%

13%

6%

53%

12%

5%

18%

8%

NF Patients 45+

NF Patients <44

Page 14: Neurofibromatosis Social Media Trends

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Source: Neurofibromatosis Social Media Trends

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.

NF Patients <44 NF Patients 45+

68%55%

Top 2 Agree

Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

43%

25%

14%

8%

4%

25%

30%

22%

10%

4%

29%

26%

13%

11%

5%

21%

42%

16%

16%

NF Caregivers 45+

NF Caregivers <44

NF Patients 45+

NF Patients <44

NF Caregivers <44

NF Caregivers 45+

55% 63%

NF Patients under Age 44 Have Strongest Support from Family And Friends

NF Patients <44 N/A – 6%NF Patients 45+ N/A – 9%

NF Caregivers <44 N/A – 16% NF Caregivers 45+ N/A – 5%

Page 15: Neurofibromatosis Social Media Trends

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Mod-sev NF Patients* Mild NF Patients**

5% 3%3% 5%

26%29%

36%

32%

25%16%

Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

Source: Neurofibromatosis Social Media Trends

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 with Moderate-to-severe NF More Likely to Report Online Communities Are An Essential Resource

60%

47%

* 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%