July 2013 Community Newsletter

Dear AVM Family and Friends,

Remember the theory that everyone and everything is only six steps away from any other person in the world? Apparently, these six degrees of separation is now down to four, as Patrick Meier of the group Digital Humanitarians puts it—thanks to prevalence of social media networks. Apparently, social media is making the world even smaller.

For some time we have been exploring this phenomenon, which has made it easier for us to connect with people and organizations that matter to our community. Ultimately, it helps us provide access to services and resources you need.

First, connecting to media resources helps us spread the word out. Articles such as Deliver Big Impact on a Small Budget on Harvard Business Review are making the rounds on Facebook and Twitter, atttractign the attention of other social media players.

Secondly, we find new friends from organizations such as Eli Lilly and theAARP, who have taken an interest in our work.

Third, it has brought our Ben’s Friends Patient Communities out from obscurity to become one of the Top 50 Social Media Influencers on Rare Diseases. Using social media definitely adds to the growth of our community—we simply can not understate its importance!

So how can you add to our site’s online social media exposure?

  1. Post your blogs, images and discussions in these pages.
  2. Share the link to these content in your social network (Facebook, Twitter, etc.). There are currently 30+ social networks worldwide according to one survey.

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IN THIS ISSUE

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AVM COMMUNITY HIGHLIGHTS

Welcome New Members

Featured Content

Featured Member

Picture of the Month

Community Stat

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben’s Friends Belongs to the Top 50 Social Media Influencers in Orphan Drug and Rare Disease

BF Co-Founder Scott Orn’s Editorial Featured in Bridgespan Compendium

New Caregiving and Benefits Check-up Tabs Added to Each Community

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Welcome New Members

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You are very fortunate to have come at a time when our community is already built built to suit your needs. Yes, this is the right place for you. Now, it’s up to you to enjoy connecting with your new family, adding to the wealth of information in the sites and familiarizing yourself with the community features. Here’s how:

1. Tell us more about yourself. Share your story on the Blog area or post a picture or video through the Media tab.

2. Explore more of the site. Use the quick Search tab for your queries and participate in the Discussions forum. Find out what each tab holds for you.

3. Connect through mobile. Yes, you can receive updates and chat using the mobile feature of your site. Just type the site URL on your browser, add /m at the end, press Enter and you are ready to go.

4. Check out the FAQ section. We value your privacy and security. Please be familiar with our site guidelines to get the most out of your membership.

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AVM COMMUNITY HIGHLIGHTS

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Featured Content: I Always Thought I Was So Alone!

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Box Barge of Elk Grove Village, IL felt alone when she was diagnosed with AVM at the time when it was barely understood. But not anymore!

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Featured Member: JBundle

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Check JBundle's talent in photography as this AVM survivor shares wonderful photos of nature in his page.

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Picture of the Month

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Check out Phil Walker's photo of baby Abany Bo, who turns 1 year old on July 23!

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Community Stat:

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Number of Members as of July 1, 2013 : 5,648

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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Ben’s Friends Belongs to the Top 50 Social Media Influencers in Orphan Drug and Rare Disease

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Ben’s Friends appears in the list of Top 50 Social Media Influencers in Orphan Drug and Rare Diseases as reported by Caroline Hornby, Marketing Director for the World Orphan Drug Congress. Those in the list--which includes patient advocacy groups, healthcare industry and government--were selected based on activity levels, engagement and community reach.

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BF Co-Founder Scott Orn’s Editorial Featured in Bridgespan Compendium

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Scott Orn’s editorial Deliver Big Impact on a Small Budget which appeared on Harvard Business Review site was selected to be a part of Bridgespan Consulting’s compendium, From Start-Up to Scale—Conversations About Scaling Social Impact, sponsored by The Omidyar Network.

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New Caregiving and Benefits Check-up Tabs Added to Each Community

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With the help of our new friends at the AARP who have taken an interest in helping Ben’s Friends, we’ve added new tabs for Caregiving and Benefits Check-up on every community. The links will take you to resources provided by the AARP. You can find the resources here too: caregiving and benefits check-up.

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