Presentation by Eileen O'Brien, Siren Interactive and Tai Spargo, NORD and Clarissa Trujillo, Lundbeck

1. TAI SPARGO
National Organization for Rare Disorders
CLARISSA TRUJILLO
Lundbeck
EILEEN O’BRIEN, MS
Siren Interactive
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

2. Collaborating for Trust:
Pharma, Patient Organizations,
& Social Media
Eileen O’Brien
Director of Search & Innovation, Siren Interactive
Tai Spargo
Special Projects Coordinator, NORD
Clarisssa Trujillo
Manager, Communications, Lundbeck
09.28.2010
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

3. How To Influence The Conversation
 Add value
o Shareworthy content
 Be trusted
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

4. Case Study
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

5. Rare Disease Patient Insights
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

6. Insight 1:
Patients with Rare Disorders feel alone and isolated.
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

7. Insight 2:
They seek a connection with others like them.
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

8. Insight 3:
They are primary drivers of diagnosis and treatment.
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

9. Insight 4:
They use the internet to educate and support each other
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

10. Insight 5:
They want pharma to participate
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

11. Shareworthy Content
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

12. Principles to Create Shareworthy Content
 Listen and Learn
 Orient Around Your Patient’s Journey
 Educate — Don’t Sell
 Measure and Analyze
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

13. The Situation
Goal: Attract more targeted patient visits to unbranded disease education
website for Primary Immune Deficiency
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

14. Listen and Learn
Key Insight: Online intelligence review found patients don’t identify
with general term ‘primary immune deficiency’, but instead with specific
type of PI:
 Common Variable Immune Deficiency (CVID)
 Wiskott Aldrich Syndrome (WAS)
Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

15. Orient Around Your Patients Journey
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

16. Educate – Don’t Sell
Solution:
Optimize content on the site
around terms that are
relevant to PI patients
searching for disease info
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

17. Measure & Analyze
Result:
Upon launch of new content
and search campaign
 200% lift in traffic to the site
 30% increase in registrations
for updates
4 times more traffic for
pages with CVID language
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

18. Build Trust Relationships
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

19. Pharma’s Reputation
Source: Epsilon, A Prescription for Customer Engagement, March 2010
N=1,350 U.S. consumers
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

20. Who Do Patients Trust?
Source: Epsilon, A Prescription for Customer Engagement, March 2010
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

21. Trust Agents
 A trust agent is a person
with online influence,
strong relationships and
a trusted reputation
 In the online health space
there are organizations who
are considered trust agents
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

22. Find The Trust Agent
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

23. Partner Enables Message Sharing
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

24. Participate In The Conversation
Key Success Factors:
 Provide value
 Consider partnering with a Trust Agent
Benefit:
 Influence the conversation and the relationship
with your brand
Remember:
 It’s not about you – it’s about the patient
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Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies