Rare Disease Day Webinar

Rare Disease Day: RaisingAwareness, Sparking Action

Path of the Blue Eye ProjectCasual Conversation Webinar 4

March 12, 2010

What is thePath?

Overview

Rare DiseaseDay Initiative Discussion

Rare Diseases& Social Media

What is thePath?

Overview

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

What is thePath?

Overview

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

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

NORD/Inspire Survey: Key Results

What is thePath?

Overview

Rare Disease Day 2010

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

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

1. Make your message SHAREWORTHY

2. Go to your audience

3. Help them share it

Three Steps to Spreading the Word

SHAREWORTHYMessageSHAREWORTHYMessage

Help them Share itHelp them Share it

Shareworthy Message

Ask Your Audience to Share Message

SHAREWORTHYMessageSHAREWORTHYMessage

Go to Your Audience

Audience Will Share

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

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

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

Facebook: Total Interactions

Facebook: Post Quality

Twitter

Alone we are Rare. Together we are Strong.

Lack of time

Limited resources

Challenges

What is thePath?

Overview

Question 1

Sustainability: How are you focusing onusing the momentum from this event topower/spark future rare disease-related

activities?

Question 2

Integration: How do you see social mediachannels serving as the “glue” for your

traditional communications efforts?

Question 3

Does our audience have any advice for NORDrelating to moving more people to take action

after they become aware of this effort?

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