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INSPIRATION DIGITAL RESEARCH FINDINGS PRESENTED BY MK TANTUM JULY 30, 2010 

3 TO LEVERAGE DIGITAL AUDIENCE AND COMPETITIVE INSIGHTS TO INFORM: •Brand positioning decisions •Campaign strategy & creative development •Digital-specific opportunities the purpose 

4 AGENDA - Our Approach - Online Conversation Insights - The Hemophilia Journey - Brand Overview - The Digital Landscape - The Findings Summary - Next Steps 

approach OUR 

ONLINE HEMOPHILIA CONVERSATION •How big is the conversation? •Who is talking? •Where does it take place? •What is being discussed? EXISTING RESEARCH AND DOCUMENTATION •Inspiration market research •Packaging research •Secondary industry research WHAT WE LOOKED AT 

who? where? what? how big? ONLINE HEMOPHILIA CONVERSATION 

technology, USING A PROPRIETARY DATA MINING WE SCOUR THE WEB FOR SOCIAL MEDIA conversations FROM THE HEMOPHILIA COMMUNITY… 

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- In general, total conversation volume is compromised by fragmentation of sources • Many hemophilia communities are dormant, lacking active, vibrant dialogues IS THE CONVO? how big Daily Strength Hemophilia Group 19 threads MD Junction Hemophilia Group 16 threads 

- Facebook mirrors similar fragmentation found on web • While there are numerous hemophilia groups on Facebook, each has very few members IS THE CONVO? how big 229 members 105 members 147 members 

12 - There are nearly twice as many “Advice-givers” as there are “Advice-seekers” in the conversation - Very few advice-seeking posts go unanswered, and typically these requests receive multiple responses but WHEN SPECIFIC ADVICE IS SOUGHT… Q? Q? A! A! A! A! A! A! A! A! A! A! A! A! A! …THE COMMUNITY IS HIGHLY ENGAGED & RESPONSIVE 

who? where? what? how big? ONLINE HEMOPHILIA CONVERSATION 

TIME PERIOD: June 1, 2009 – June 1, 2010 TOTAL: 800 social media posts, retrieved & analyzed who IS TALKING ONLINE? 

• Highly engaged, proactive • Actively seeks and shares latest information, research • Extraordinarily tech-savvy • Empowered, very involved in treatment decisions • Confident in self-assessment • Knowledgeable about medical research and product manufacturing processes who IS TALKING ONLINE? 

who? where? what? how big? ONLINE HEMOPHILIA CONVERSATION 

The HFA sponsors a ‘Blood Brotherhood’ members forum The HFA sponsors a ‘Blood Brotherhood’ members forum Currently has over 229 active members, depth of conversation Currently has over 229 active members, depth of conversation Participation in the community is strictly limited to patients Participation in the community is strictly limited to patients Conversation is frank, unedited, personal Conversation is frank, unedited, personal ARE THEY TALKING? where 

The NHF’s site, Hemophilia.org, contains discussion boards for patients and caregivers The NHF’s site, Hemophilia.org, contains discussion boards for patients and caregivers Majority of conversation is around new diagnosis Majority of conversation is around new diagnosis 296 members 296 members ARE THEY TALKING? where 

MyBloodBrothers.com is a patient-created hemophilia community site MyBloodBrothers.com is a patient-created hemophilia community site Site includes personal blogs, multimedia submissions, and RSS feeds from across the web Site includes personal blogs, multimedia submissions, and RSS feeds from across the web 649 members 649 members ARE THEY TALKING? where 

ARE THEY TALKING? where 

who? where? what? how big? ONLINE HEMOPHILIA CONVERSATION 

22 ARE THEY TALKING ABOUT? what Conversation is predominately EMOTIONAL rather than informational in nature 

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ARE THEY TALKING ABOUT? what 

conversation insights THE 

26 Dialogue is intimate, and authors express affection and a loyalty typically reserved for one’s biological family Hemophilia is a Family Affair… lets stand united as ONE my brothers. Hemophilia is a Family Affair… lets stand united as ONE my brothers. Even though I don't know you guys personally, I feel like you guys get me better than some folks that have known me my whole life. Even though I don't know you guys personally, I feel like you guys get me better than some folks that have known me my whole life. Welcome to the family…if you need ANYTHING, just email, call, we’re here for you. Welcome to the family…if you need ANYTHING, just email, call, we’re here for you. Keep your head up bro… we all have you in our prayers and are thinking about you daily Keep your head up bro… we all have you in our prayers and are thinking about you daily CONVERSATION IS FAMILIAL, EMOTIONAL 1 

27 FRATERNAL ‘BROTHERHOOD’ PERVADES 2 Within patient conversation, the terms, “Brother,” and, “Brotherhood,” appear frequently I have found "Brothers from another mother” all over the country, and I LOVE IT!! Brothers unite, we’re bound together by this! I, and by extension the Blood Brotherhood, is here FOR YOU and you can lean on us at any time!! Loyalty to the brotherhood is so profound – some patients go so far as to tattoo the ‘blood brother’ emblem onto their bodies 

SKEPTICAL OF OUTSIDERS 3 PATIENT BLOG The truth…is that I cannot make anyone not living the life understand it… Ours is a surprisingly private hell. -- PATIENT BLOG We all have hemophilia. We are equally affected by that which afflicts us…We are HEMOPHILIACS! We are BLEEDERS! - Expressed desire for privacy, legitimacy in patient communities - Patients discuss controversial topics such as self-medication techniques, loopholes in insurance system, and their opinions of HTC’s and physicians - Very sensitive to origin of information - “insiders” vs. “outsiders” 

29 Interestingly, considering the life-altering impact treatment represents for this condition, brands and mfg’s are virtually absent from the conversation BRANDS ARE ABSENT 4 posts 17 BRAND NAME MENTIONS 

30 - Very strong sense of how far treatment has advanced in last 20 years - Community is highly optimistic that major advancements in the disease will be realized in the near future Older dude's had a TOUGH road to run…we are deriving the benefit of all the HELL they went through. Hopefully the generation behind us, will benefit even MORE...!!!! Older dude's had a TOUGH road to run…we are deriving the benefit of all the HELL they went through. Hopefully the generation behind us, will benefit even MORE...!!!! One of the reasons I survived some of my more dramatic hemorrhages is because I knew my grandfather had survived even worse. One of the reasons I survived some of my more dramatic hemorrhages is because I knew my grandfather had survived even worse. I am very proud of the way the medical field has developed and just how far we have come, trust me hunny, we have come a long way. I am very proud of the way the medical field has developed and just how far we have come, trust me hunny, we have come a long way. We're living longer, more productive lives than previous generations.. There are going to be firsts happening soon, MANY of them! We're living longer, more productive lives than previous generations.. There are going to be firsts happening soon, MANY of them! 6. OBLIGATION TOWARDS ADVOCACY OVERWHELMING SENSE OF OPTIMISM 5 

CONVERSATION IS FAMILIAL, EMOTIONAL FRATERNAL ‘BROTHERHOOD’ PERVADES SKEPTICAL OF OUTSIDERS BRANDS ARE ABSENT OPTIMISM, SHARED VISION FOR FUTURE conversation insights 1 2 3 4 5 

THIS ANALYSIS ILLUMINATED THE HEMOPHILIA AUDIENCE’S NEEDS THIS ANALYSIS ILLUMINATED THE HEMOPHILIA AUDIENCE’S NEEDS ONLINE HEMOPHILIA CONVERSATION •How big is the conversation? •Who is talking? •Where does it take place? •What is being discussed? EXISTING RESEARCH AND DOCUMENTATION •Inspiration market research •Packaging research •Secondary industry research THESE AUDIENCE NEEDS PROVIDED US WITH A LENS TO EVALUATE THE ONLINE LANDSCAPE THESE AUDIENCE NEEDS PROVIDED US WITH A LENS TO EVALUATE THE ONLINE LANDSCAPE 

EDUCATION & INFORMATION ADVOCACY & OUTREACH TREATMENT- RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS CATEGORIES OF HEMOPHILIA NEEDS 

digital landscape THE 

OUR METHODOLOGY We input a list of over 50 hemophilia-specific keywords into our proprietary search engine indexing technology to identify the sites that are most relevant. We then conduct qualitative and quantitative analysis on these sites. *Over 350 total sites were analyzed 

BRAND OVERVIEW DESIRE FOR NORMALCY EFFECTIVE CONVENIENT SCIENTIFIC ADVANTAGE 

37 • Support for newly diagnosed • General disease and treatment information • Treatment options that exist • Identify patient and caregiver communities • Access to physicians and HTC’s EDUCATION & INFORMATION ADVOCACY & OUTREACH TREATMENT- RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY ADVOCACY & OUTREACH TREATMENT-RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS 

EDUCATION & INFORMATION EDUCATION & INFORMATION TREATMENT-RELATED DAY-TO-DAY LIFE ADVOCACY & OUTREACH EMOTIONAL NEEDS ADVOCACY & OUTREACH TREATMENT-RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • General disease and treatment information • Support for newly diagnosed • Treatment options that exist • Support communities • Access to physicians and HTC’s 

EDUCATION & INFORMATION WFH.org WORLD FEDERATION OF HEMOPHILIA • Basic disease education content • Global treatment center directory • News and program updates • Approx. 2,538 monthly visits, Average length of stay on site 3:26 

EDUCATION & INFORMATION Hemophilia.org NATIONAL HEMOPHILIA FOUNDATION • More exhaustive disease education content • Advocacy information and research publications • HCP content • Approx. 9,116 monthly visits, Average length of stay on site 4:30 

EDUCATION & INFORMATION HemophiliaFed.org HEMOPHILIA FEDERATION OF AMERICA • Advocacy events and information • Patient and caregiver programs, “voices” • News and links to other community groups • Approx. 600 monthly visits, Average length stay on site 3:02 

EDUCATION & INFORMATION HemAware.org NHF’S PUBLICATION SITE • HemAware Jr. site designed for kids • Site accepts branded advertisements • Patient and caregiver advocacy programs, such as “Voices” • Approx. 350 monthly visits 

EDUCATION & INFORMATION KelleyCom.com LA KELLEY COMMUNICATIONS • Caregiver and advocate Laureen Kelley created site • Baxter and Accredo are site sponsors and advertise products on the site • HemaBlog, ProjectShare, and links to scholarships and publications • 2,079 monthly visits, Average 2:02 stay 

EDUCATION & INFORMATION CDC.gov INTERACTIVE HTC SEARCH TOOL • HTC Reports and directory • Patient monitoring tools (login provided by the HTC) • Forms and links to patient resources 

EDUCATION & INFORMATION ChangingPossibilitiesInHemophilia.com NOVO NORDISK UNBRANDED SITE • Inhibitor family information site • Links to various support programs for patients • “Coalition Program” solicits enrollment for future messaging • Less than 500 monthly visits 

EDUCATION & INFORMATION ThereForYou.com BAXTER UNBRANDED SITE • Patient stories and testimonials • Opportunity to find a Baxter rep via the site – no interaction on site • Info about managing hemophilia • Less than 500 monthly visits 

EDUCATION & INFORMATION AllAboutBleeding.com CSL BEHRING UNBRANDED SITE • Patient and caregiver stories • Physician content • News and links to external sites • Less than 500 monthly visits 

48 ADVOCACY & OUTREACH TREATMENT-RELATED EDUCATION & INFORMATION DAY-TO-DAY LIFE EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Connection to larger hemophilia community • Experiences from other patients/caregivers • Opportunities to network with community • Mentorship from patients • Family and relationship counseling • Reassurance from nurse/hematologists 

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EMOTIONAL NEEDS HemophiliaMoms.com CSL BEHRING UNBRANDED SITE • Mom blogs and resources • Targeted information for moms and caregivers • Stories and testimonials • Less than 500 monthly visits, Average length of stay on site < 0:30 

EMOTIONAL NEEDS HemophiliaVillage.com PFIZER • LifeLines emotional support program • Text-based site, no true community features (comments, etc.) • Approx. 1,000 monthly visits, Average length of stay < 0:30 

EMOTIONAL NEEDS HemaBlog KELLEYCOM.COM CAREGIVER BLOG • Primarily focused on emotional aspects of caregiver role • Candid, personal tone, responsive to comments • Site sponsored by Baxter and Accredo 

53 EDUCATION & INFORMATION ADVOCACY & OUTREACH EMOTIONAL NEEDS TREATMENT-RELATED DAY-TO-DAY LIFE NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • School and career planning • Tips for practically managing disease impact • Financial support – scholarships, grants, etc. • Travel facilitation • Sports and activity information • Diet, nutrition, and exercise • Supportive products— compression, medic bracelet, etc 

DAY-TO-DAY LIFE NEEDS CDC Pamphlet BASIC CONCEPTS OF HEMOPHILIA • Includes tips for living with and managing the disease • Printable, no interactivity BeneFIX.com NHF SPORTS RATING CHART • List of sports activities and their ratings • Compiled in easy-to-take format, printable • Lacks interactivity 

DAY-TO-DAY LIFE NEEDS HemophiliaHealth.com TRAVEL PLANNER • Travel planning support tool • Integrates Google maps with HTC locations across the country • Interactive and versatile 

DAY-TO-DAY LIFE NEEDS FactorFitness.co.uk UNBRANDED UK SITE FOR KIDS • Games and quizzes – Kid-K interactive game • Photo galleries, sports information • Guide for teachers and parents on school tips and management • Less than 500 monthly visits, Average length of stay on site <0:30 

DAY-TO-DAY LIFE NEEDS LivingBeyondHemophilia.com UNBRANDED BAYER SITE • Mentor program information • College and career planning tips • Thin, text-based content • Less than 200 monthly visits, Average length of stay on site <0:30 

DAY-TO-DAY LIFE NEEDS LivingWithHemophilia.com BAYER UNBRANDED SITE • Tips for living with disease • Video and multimedia content about fitness and nutrition • Factor Tracking app for monitoring disease • Approx. 1,500 monthly visits, Average length of stay: 0:45 

PatientServicesInc.org 3RD PARTY PATIENT ADVOCATE RESOURCE • Co-pay assistance search and applications • Stories of hope for patients with chronic disease • Patient programs and donor matching program Kelleycom.com SCHOLARSHIP LIST • Third party listing of available hemophilia scholarships and links to external sites FINANCIAL NEEDS 

FINANCIAL NEEDS MyEducationAdvantage.com BAXTER UNBRANDED SITE • School and educational guidance and information • Scholarship applications • Career goal planning • Less than 200 monthly visits, Average length of stay <0:30 

61 EMOTIONAL NEEDS EDUCATION & INFORMATION DAY-TO-DAY LIFE ADVOCACY & OUTREACH TREATMENT- RELATED NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Product comparisons and recommendations • Administration support and coaching • Paying for treatment and reimbursement • Monitoring and tracking progress with treatment • Managing treatment inventory • Emergency access to treatment 

Consistent with MRB Survey data, the online conversation confirms that only a minority of patients currently use electronic treatment logs. While many of their HTC’s recommend them, patient adoption remains low. Patients cited issues such as insufficient functionality and non-intuitive interfaces or devices as primary concerns with existing solutions. – MRB Survey on Hemophilia Care & Price Monitoring United States, May 2008 

TREATMENT-RELATED NEEDS Advoy PROVIDED BY THE ATHN KogenateFS EZ-Log BAYER HeliTrax CSL BEHRING 

TREATMENT-RELATED NEEDS Factor Track BAYER • Most recent and interactive mobile tracking log • Customized infusion schedule • Not product-specific • No interaction with HTC within device 

65 DAY-TO-DAY LIFE EMOTIONAL NEEDS TREATMENT-RELATED EDUCATION & INFORMATION ADVOCACY & OUTREACH NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Contribute towards global treatment access • Attend advocacy events • Stay aware of latest advocacy initiatives and legislative issues • Promote greater public disease awareness and education • Community leadership • Identify and participate in clinical trials 

ADVOCACY & OUTREACH SaveOneLife.net 3RD PARTY ADVOCACY INITIATIVE • Donate factor to those in need • Promotes global access to treatment • Facebook campaign integration, vibrant discussion • Approx. 229 Facebook fans 

ADVOCACY & OUTREACH HFA’s “Hear My Voice” HEMOPHILIA FEDERATION OF AMERICA • Advocacy events and information • Patient and caregiver, “voices” compilation of real experiences • Advocacy in a box program • Link to participate in legislation advocacy (send letter) 

68 WHILE MANY DIGITAL PROPERTIES EXIST…WHICH ONES ARE REALLY BEING UTILIZED BY THE ONLINE AUDIENCE? 

greatest share WHO IS CAPTURING THE attention Click on the question mark to find out (Internet Connection Required) ? OF THE ONLINE HEMOPHILIA AUDIENCE’S 

70 WHILE MANY SOLUTIONS EXIST, THIS COMMUNITY IS RESOURCEFUL, OFTEN PIONEERING AND EXECUTING THEIR OWN INNOVATIONS AND WORKAROUNDS patient-driven innovation 

71 RESOURCEFUL, INNOVATIVE I’ve tried the “Game Ready” contraption for icing my bleeds – its supposed to be for athletes, but it really helps… I’ve tried the “Game Ready” contraption for icing my bleeds – its supposed to be for athletes, but it really helps… I've developed my own computer model for calculating my factor level. It can also tell me when my level will reach my critical level (for me- 35%). I've developed my own computer model for calculating my factor level. It can also tell me when my level will reach my critical level (for me- 35%). This might help…I’ve been peeling the labels off product vials after I use them, and then I stick them to a calendar This might help…I’ve been peeling the labels off product vials after I use them, and then I stick them to a calendar I have my medic alert info tattooed on my wrist, so no more dealing with bulky bracelets I have my medic alert info tattooed on my wrist, so no more dealing with bulky bracelets 

72 IMAGINING POSSIBILITIES Imagine if you could just scan whatever labels come on the boxes and something would automatically log my infusions… Imagine if you could just scan whatever labels come on the boxes and something would automatically log my infusions… Would love it if I didn’t have to think about ordering supplies constantly…if it just happened like magic. Would love it if I didn’t have to think about ordering supplies constantly…if it just happened like magic. I’d love to be able to do a study and easily calculate my half life – anyone have any experience with this? I’d love to be able to do a study and easily calculate my half life – anyone have any experience with this? 

73 PATIENT-DRIVEN INNOVATION 

findings summary THE 

75 FINDINGS SUMMARY •In some cases, solutions do not exist •Existing solutions are primitive •Fragmentation of overall landscape persists Key audience needs still remain unmet Key audience needs still remain unmet •Community bias towards “for us, by us” approach •Recognize the innate desire for authenticity, skepticism towards outsiders •No brand loyalty or enthusiasm pervades For a brand to become relevant, a fresh approach is necessary For a brand to become relevant, a fresh approach is necessary •Inherently tech-savvy audience •Existing solutions lack engagement •Collaborative, innovative nature of the community Digital innovation is ripe for creating real impact Digital innovation is ripe for creating real impact