Rare Disease Day Webinar

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These are the slides from our Casual Conversation Webinar focusing on raising awareness and sparking action around rare diseases.

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Rare Disease Day Webinar

  1. 1. Rare Disease Day: Raising Awareness, Sparking Action Path of the Blue Eye Project Casual Conversation Webinar 4 March 12, 2010
  2. 2. Overview What is the Rare Diseases Path? & Social Media Rare Disease Discussion Day Initiative 2
  3. 3. Overview What is the Rare Diseases Path? & Social Media Rare Disease Discussion Day Initiative 3
  4. 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. 5. Overview What is the Rare Diseases Path? & Social Media Rare Disease Discussion Day Initiative 5
  6. 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 6
  7. 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 7
  8. 8. NORD/Inspire Survey: Key Results 8
  9. 9. NORD/Inspire Survey: Key Results 9
  10. 10. NORD/Inspire Survey: Key Results 10
  11. 11. Overview What is the Rare Diseases Path? & Social Media Rare Disease Discussion Day Initiative 11
  12. 12. Rare Disease Day 2010 12
  13. 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 13
  14. 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 14
  15. 15. Three Steps to Spreading the Word 1. Make your message SHAREWORTHY 2. Go to your audience 3. Help them share it 15
  16. 16. Shareworthy Message SHAREWORTHY Message Help them Share it 16
  17. 17. Ask Your Audience to Share Message 17
  18. 18. Go to Your Audience SHAREWORTHY Message 18
  19. 19. Audience Will Share 19
  20. 20. Audience Will Share 20
  21. 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 21
  22. 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 22
  23. 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 23
  24. 24. Facebook: Total Interactions 24
  25. 25. Facebook: Post Quality 25
  26. 26. Twitter 26
  27. 27. Alone we are Rare. Together we are Strong. 27
  28. 28. Challenges  Lack of time  Limited resources 28
  29. 29. Overview What is the Rare Diseases Path? & Social Media Rare Disease Discussion Day Initiative 29
  30. 30. Question 1 Sustainability: How are you focusing on using the momentum from this event to power/spark future rare disease-related activities? 30
  31. 31. Question 2 Integration: How do you see social media channels serving as the “glue” for your traditional communications efforts? 31
  32. 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? 32

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