Rare Disease Day Webinar

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

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

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

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

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

NORD/Inspire Survey: Key Results 8

Rare Disease Day 2010 12

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

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

Three Steps to Spreading the Word 1. Make your message SHAREWORTHY 2. Go to your audience 3. Help them share it 15

Shareworthy Message SHAREWORTHY Message Help them Share it 16

Ask Your Audience to Share Message 17

Go to Your Audience SHAREWORTHY Message 18

Audience Will Share 19

Audience Will Share 20

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

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

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

Facebook: Total Interactions 24

Facebook: Post Quality 25

Twitter 26

Alone we are Rare. Together we are Strong. 27

Challenges  Lack of time  Limited resources 28

Question 1 Sustainability: How are you focusing on using the momentum from this event to power/spark future rare disease-related activities? 30

Question 2 Integration: How do you see social media channels serving as the “glue” for your traditional communications efforts? 31

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

Rare Disease Day Webinar

by Path of the Blue Eye Project on Mar 12, 2010

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