August 2013 Community Newsletter

Dear Amyloidosis Family and Friends,

It’s amazing how the collective site activities of Ben’s Friends Patient Communities are peaking up even in summer, the time of year which usually coincides with huge dips!

Here are some of the returns:

  • 600,000+ page views in mid-August
  • 88,000+ visits, half of which are unique
  • 33,000+ registered friends

The numbers are reflective of something more important: people in need of support and understanding are getting it. Plus, we gain the recognition of peer organizations outside, while strong friendships are being forged within the communities.

Let’s maintain the momentum! Your contribution, whatever the size, helps in this growth.

Meanwhile, we continue to look for ways to keep you abreast with developments and news about studies, research, resource and management of your particular rare conditions.

Soon every Ben’s Friends patient community will don an In The News tab where moderators can collate relevant information gathered from the net to create periodic digests. Here is a pilot run in our Living with Fibro site which we are fine-tuning right now.

This will surely bring in more interest and, more importantly, bring more information at the end of your fingertips!

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IN THIS ISSUE

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Amyloidosis 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 Reaches 33,000+ Members

Ben's Friends All Time Traffic High in Summer No Less

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

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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 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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Amyloidosis COMMUNITY HIGHLIGHTS

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Featured Content: Amyloidosis: What you need to know - Mayo Clinic

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Watch this interesting Mayo Clinic video on Amyloidosis found by Armando.

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Featured Member: Anomarsf

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Welcome Anomarsf of San Francisco, CA who had a stem cell transplant at UCSF for her amy!

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Picture of the Month

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Check out Tez_20's beautiful wall picture--a gentle reminder that with hope everything is possible!

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Community Stat:

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Number of Members as of August 1, 2013 : 98

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben’s Friends continues to grow and make a difference for people affected by rare diseases. Check out these updates!

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Ben's Friends Reaches 33,000+ Members

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Our communities have surpassed 33,000 members this month and continue to grow every day! Browse through the stats here.

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Ben's Friends All Time Traffic High in Summer No Less

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Ben’s Friends Patient Support Communities hits an all-time traffic high in the middle of August! This is crazy as summer usually coincides with a huge traffic dip. Big things are happening!

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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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BensFriends.org appears in the list of Top 50 Social Media Influencers in Orphan Drug and Rare Diseases reported by the World Orphan Drug Congress. In the list are patient advocacy, healthcare and government organizations selected based on activity levels, engagement and community reach.

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