SOCIAL MEDIA, SPORTS, & DISEASES:    a “rare” combination that could help millionsfrom BensFriends.org, rare disease commu...
STATS• 6,000+ rare diseases• ~25M Americans with rare diseases  (that’s 1 in 12!)• 300M+ more globally!
BENSFRIENDS.ORG 1 MINUTE VIDEO   CLICK ON THE PIC ABOVE OR LINK BELOW FOR QUICK SUMMARY VIDEO   www.youtube.com/watch?feat...
BENSFRIENDS.ORG MISSIONTo ensure that everyonewith a rare disease has asafe place to connect withpeople like them.
PLAYER PROFILE                         BensFriends.org      Profession:      Social Media organization for people affected...
RESOURCESSOCIAL MEDIA     PEOPLE/ORGS
ATHLETES WITH RARE DISEASESATHLETE               RARE DISEASEAtrialSeptal Defect   Kerry Wood, TedyBruschiPsoriatic Arthri...
WAYS TO CONNECTConnect your…Fans / Customers / EmployeeswithTeam / Company
BEST PRACTICES IN SOCIAL MEDIA   ACTION                                DETAILSInvolve      Get members (fans, employees, c...
WAYS TO HELP•Advice•Assistance•Awareness
SPECIFIC IDEAS•   24 Hour Fitness Bike-a-thon vs. Rare Diseases•   Oakland A’s for Awareness of Rare Diseases Night•   SF ...
ACTIONHow can we help you AND jointly help millions in need?      BENSFRIENDS.ORG          ekroll@bensfriends.org
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Bensfriends.org - social media, sports, & diseases - a “rare” combination that could help millions (preso dec 2010 - updated aug 2012)

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BENSFRIENDS.org - SOCIAL MEDIA, SPORTS, & DISEASES Presentation - A “rare” combination that could help millions. By BensFriends.org - a social media company for people affected by rare diseases.

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Bensfriends.org - social media, sports, & diseases - a “rare” combination that could help millions (preso dec 2010 - updated aug 2012)

  1. 1. SOCIAL MEDIA, SPORTS, & DISEASES: a “rare” combination that could help millionsfrom BensFriends.org, rare disease community network
  2. 2. STATS• 6,000+ rare diseases• ~25M Americans with rare diseases (that’s 1 in 12!)• 300M+ more globally!
  3. 3. BENSFRIENDS.ORG 1 MINUTE VIDEO CLICK ON THE PIC ABOVE OR LINK BELOW FOR QUICK SUMMARY VIDEO www.youtube.com/watch?feature=player_embedded&v=YBeRFnJkleU
  4. 4. BENSFRIENDS.ORG MISSIONTo ensure that everyonewith a rare disease has asafe place to connect withpeople like them.
  5. 5. PLAYER PROFILE BensFriends.org Profession: Social Media organization for people affected by rare diseases Birth Date: November 2007 Birth Place: Austin, TX Stats: 20,000+ members across 30+ disease communities 60,000+ uniques/month & 560,000+ page views/month Fast growth YEAR COMMUNITIES MEMBERS 2009 4 1,500 2010 23 7,000 2011 28 14,000* Projected 2012* 36 25,000
  6. 6. RESOURCESSOCIAL MEDIA PEOPLE/ORGS
  7. 7. ATHLETES WITH RARE DISEASESATHLETE RARE DISEASEAtrialSeptal Defect Kerry Wood, TedyBruschiPsoriatic Arthritis Phil MickelsonLupus Tim RainesBrain Aneurysms Peter GammonsCrohns David Garrard, Theo Fleury, 49er Al Harris’s sonPrimary Sclerosing Walter Payton (late NFL)AVM AJ Price (NBA)Charcot Marie Tooth Bartlett Giamatti (late MLB commish)
  8. 8. WAYS TO CONNECTConnect your…Fans / Customers / EmployeeswithTeam / Company
  9. 9. BEST PRACTICES IN SOCIAL MEDIA ACTION DETAILSInvolve Get members (fans, employees, community) involved earlyTailor Focus on members’ needs/wants & update regularlyRecognize Feature best members (eg, season ticketholders)Enable Easy tools to post content, refer friends, etc; clarity; picturesIncentives Give people even more reason to take action
  10. 10. WAYS TO HELP•Advice•Assistance•Awareness
  11. 11. SPECIFIC IDEAS• 24 Hour Fitness Bike-a-thon vs. Rare Diseases• Oakland A’s for Awareness of Rare Diseases Night• SF Giants: Championing the Patient Cause e-campaign• Sporting News article: players overcoming Rare Diseases• Catalyst PR creates buzz while saving lives• USTREAM: Live rare disease doctor forum• Visa Signature Behind the Scenes donation offer• EA: Tackling Rare Diseases “in the Game”• San Jose Sharks: Teal Twitter Touching Moments
  12. 12. ACTIONHow can we help you AND jointly help millions in need? BENSFRIENDS.ORG ekroll@bensfriends.org

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