rare disease day webinar
DESCRIPTION
These are the slides from our Casual Conversation Webinar focusing on raising awareness and sparking action around rare diseases.TRANSCRIPT
Rare Disease Day: RaisingAwareness, Sparking Action
Path of the Blue Eye ProjectCasual Conversation Webinar 4
March 12, 2010
2
What is thePath?
Overview
Rare DiseaseDay Initiative Discussion
Rare Diseases& Social Media
3
What is thePath?
Overview
Rare DiseaseDay Initiative Discussion
Rare Diseases& Social Media
4
What is the Project All About?
Providing Tools for Education, Collaboration
Collecting and Sharing Knowledge,For Today & Future
Bringing Diverse Group of Health MarketingCommunications Pros Together
5
What is thePath?
Overview
Rare DiseaseDay Initiative Discussion
Rare Diseases& Social Media
6
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 than200,000 Americans
Through programs of education, advocacy, researchand patient assistance, NORD serves the nearly 30million Americans who have rare diseases
NORD
7
How is Social Media Impacting theRare Disease Community?
2010 Inspire/NORD Community Survey
Focused on benefits of community for socialand physical health, unmet needs
554 members of Inspire NORDcommunity completed survey
8
NORD/Inspire Survey: Key Results
9
NORD/Inspire Survey: Key Results
10
NORD/Inspire Survey: Key Results
11
What is thePath?
Overview
Rare DiseaseDay Initiative Discussion
Rare Diseases& Social Media
12
Rare Disease Day 2010
13
A global initiative launched two years ago byEURORDIS to raise awareness of rare diseases as apublic health concern
NORD is national sponsor
Observed on the last day of February
Rare Disease Day
14
How could NORD best support this grassroots initiativeto increase awareness?
Create a website: one central location for allinformation, easy to navigate, focused
Gather information on events and activities
Ask organizations to become partners
Encourage individuals to ask governors for stateproclamations supporting Rare Disease Day
Get social
Rare Disease Day US 2010
15
1. Make your message SHAREWORTHY
2. Go to your audience
3. Help them share it
Three Steps to Spreading the Word
16
SHAREWORTHYMessageSHAREWORTHYMessage
Help them Share itHelp them Share it
Shareworthy Message
17
Ask Your Audience to Share Message
18
SHAREWORTHYMessageSHAREWORTHYMessage
Go to Your Audience
19
Audience Will Share
20
Audience Will Share
21
Emailed partners and asked them to share the wordwith their members
NORD website referred visitors
Press releases
Support from partners drove traffic
Lundbeck Raise Your Hand campaign
Shire FlipVideo Giveaway
Utilize All Marketing Channels
22
Blog by NORD's president on Larry King LiveFacebook page
ABC News website story: "Not Crazy: FamiliesFacing Rare Disease Unite“
Many local news stories based on proclamations:"UCF Students get Rare Disease Day Recognized inFlorida" (OrlandoSentinel.com)
Discovery Health promoted NORD and RareDisease Day in conjunction with launch of new TVshow
Traditional Media Results
23
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
Interactive Results
24
Facebook: Total Interactions
25
Facebook: Post Quality
26
27
Alone we are Rare. Together we are Strong.
28
Lack of time
Limited resources
Challenges
29
What is thePath?
Overview
Rare DiseaseDay Initiative Discussion
Rare Diseases& Social Media
30
Question 1
Sustainability: How are you focusing onusing the momentum from this event topower/spark future rare disease-related
activities?
31
Question 2
Integration: How do you see social mediachannels serving as the “glue” for your
traditional communications efforts?
32
Question 3
Does our audience have any advice for NORDrelating to moving more people to take action
after they become aware of this effort?