The document discusses Rare Disease Day, an initiative to raise awareness of rare diseases. It provides details on the initiative's goals of creating a central website for information, gathering event listings, and encouraging social media engagement. Metrics are given on the success of the website, social media interactions, and traditional media coverage. Challenges of limited time and resources are also noted. The webinar focused on discussing how to sustain momentum from Rare Disease Day, integrate social media with other communications, and encourage more people to take action after learning about rare diseases.

1. Rare Disease Day: Raising
Awareness, Sparking Action
Path of the Blue Eye Project
Casual Conversation Webinar 4
March 12, 2010

2. Overview
What is the Rare Diseases
Path? & Social Media
Rare Disease
Discussion
Day Initiative
2

3. Overview
What is the Rare Diseases
Path? & Social Media
Rare Disease
Discussion
Day Initiative
3

4. What is the Project All About?
Bringing Diverse Group of Health Marketing
Communications Pros Together
Providing Tools for Education, Collaboration
Collecting and Sharing Knowledge,
For Today & Future
4

5. Overview
What is the Rare Diseases
Path? & Social Media
Rare Disease
Discussion
Day Initiative
5

6. NORD
National Organization for Rare Disorders (NORD)
 Non-profit organization established in 1983
 Dedicated to helping people with rare diseases and
assisting the organizations that represent them
 A rare disease is one that affects fewer than
200,000 Americans
 Through programs of education, advocacy, research
and patient assistance, NORD serves the nearly 30
million Americans who have rare diseases
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7. How is Social Media Impacting the
Rare Disease Community?
2010 Inspire/NORD Community Survey
Focused on benefits of community for social
and physical health, unmet needs
554 members of Inspire NORD
community completed survey
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8. NORD/Inspire Survey: Key Results
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9. NORD/Inspire Survey: Key Results
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10. NORD/Inspire Survey: Key Results
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11. Overview
What is the Rare Diseases
Path? & Social Media
Rare Disease
Discussion
Day Initiative
11

12. Rare Disease Day 2010
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13. Rare Disease Day
 A global initiative launched two years ago by
EURORDIS to raise awareness of rare diseases as a
public health concern
 NORD is national sponsor
 Observed on the last day of February
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14. Rare Disease Day US 2010
 How could NORD best support this grassroots initiative
to increase awareness?
 Create a website: one central location for all
information, easy to navigate, focused
 Gather information on events and activities
 Ask organizations to become partners
 Encourage individuals to ask governors for state
proclamations supporting Rare Disease Day
 Get social
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15. Three Steps to Spreading the Word
1. Make your message SHAREWORTHY
2. Go to your audience
3. Help them share it
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16. Shareworthy Message
SHAREWORTHY
Message
Help them Share it
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17. Ask Your Audience to Share Message
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18. Go to Your Audience
SHAREWORTHY
Message
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19. Audience Will Share
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20. Audience Will Share
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21. Utilize All Marketing Channels
 Emailed partners and asked them to share the word
with their members
 NORD website referred visitors
 Press releases
 Support from partners drove traffic
 Lundbeck Raise Your Hand campaign
 Shire FlipVideo Giveaway
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22. Traditional Media Results
 Blog by NORD's president on Larry King Live
Facebook page
 ABC News website story: "Not Crazy: Families
Facing Rare Disease Unite“
 Many local news stories based on proclamations:
"UCF Students get Rare Disease Day Recognized in
Florida" (OrlandoSentinel.com)
 Discovery Health promoted NORD and Rare
Disease Day in conjunction with launch of new TV
show
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23. Interactive Results
 Website launched December 9, 2009
17,565 visits with 58,508 page views
Average of 3.33 pages/visit , 2:52 minutes on site
 39 State Proclamations
 30 national events submitted
 60 patient stories submitted
 350+ partners
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24. Facebook: Total Interactions
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25. Facebook: Post Quality
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26. Twitter
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27. Alone we are Rare. Together we are Strong.
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28. Challenges
 Lack of time
 Limited resources
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29. Overview
What is the Rare Diseases
Path? & Social Media
Rare Disease
Discussion
Day Initiative
29

30. Question 1
Sustainability: How are you focusing on
using the momentum from this event to
power/spark future rare disease-related
activities?
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31. Question 2
Integration: How do you see social media
channels serving as the “glue” for your
traditional communications efforts?
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32. Question 3
Does our audience have any advice for NORD
relating to moving more people to take action
after they become aware of this effort?
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