bensfriends.org - social media, sports, & diseases - a “rare” combination that could help...
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SOCIAL MEDIA, SPORTS, & DISEASES:a “rare” combination that could help millions
from BensFriends.org, rare disease community network
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 VIDEOwww.youtube.com/watch?feature=player_embedded&v=YBeRFnJkleU
BENSFRIENDS.ORG MISSION
To ensure that everyone with a rare disease has a safe place to connect with people like them.
PLAYER PROFILE
BensFriends.org
YEAR COMMUNITIES MEMBERS
2009 4 1,500
2010 23 7,000
2011 28 14,000
2012* 36 25,000* Projected
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 communities60,000+ uniques/month & 560,000+ page views/monthFast growth
RESOURCESPEOPLE/ORGSSOCIAL MEDIA
ATHLETES WITH RARE DISEASES
ATHLETE RARE DISEASE
AtrialSeptal Defect Kerry Wood, TedyBruschi
Psoriatic Arthritis Phil Mickelson
Lupus Tim Raines
Brain Aneurysms Peter Gammons
Crohns David Garrard, Theo Fleury, 49er Al Harris’s son
Primary Sclerosing Walter Payton (late NFL)
AVM AJ Price (NBA)
Charcot Marie Tooth Bartlett Giamatti (late MLB commish)
WAYS TO CONNECT
Connect your…
Fans / Customers / Employees
with
Team / Company
BEST PRACTICES IN SOCIAL MEDIA
ACTION DETAILS
Involve Get members (fans, employees, community) involved early
Tailor Focus on members’ needs/wants & update regularly
Recognize Feature best members (eg, season ticketholders)
Enable Easy tools to post content, refer friends, etc; clarity; pictures
Incentives Give people even more reason to take action
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 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
ACTION
How can we help you AND jointly help millions in need?