Dear Friends and Family of Amyloidosis,
Lately, I have been receiving invitations for interviews both on broadcast and webcast media particularly on the subject of what makes our patient communities grow and endure. I oblige with the following statements consistently.
The Power of Human Connection – Having seen firsthand how real patients and caregivers respond to our communities reinforced my belief in human connection’s incredible contribution to the healing process: that it is effective therapy and the sharing of information fast tracks the discovery of answers to individual aches.
What’s more, rare disease patients who join our online communities no longer feel “orphaned”, as rare diseases and conditions are often described. Instead, social media found a way to offer solace and hope where previously it was lacking.
Be True to Your Purpose – Another key to Ben’s Friends’ success is the power of authenticity: we are founded by real patients, run by real disease sufferers, and meant for them and their caregivers. Our clarity of purpose and vision, the drive to accomplish our mission of providing support to patients of every rare disease no matter how small, with clear stated objectives resonated down to its members through social media tools, keeps the organization whole. This authenticity and integrity sustains the influx of members and visitors, not revenue or traffic numbers (we view these as mere performance indicators).
We will never sacrifice these values, truth and integrity, knowing that member/followers are discriminating and won’t give a second chance.
Combine these and we’ll never go wrong.
IN THIS ISSUE
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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
A New Milestone for Living with Fibro and Life with Lupus Communities
Ben's Friends and RareGenomics Podcasts Interview Series
New Communities Launched — Sjogren’s Syndrome Support and Lyme Disease Support Network
AMYLOIDOSIS COMMUNITY HIGHLIGHTS
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Welcome New Members
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Welcome aboard! We have just the right people for your support – people who understands how it feels to have a rare condition like yours, who ‘have been there, done that’ and knows what works. So why not make yourself at home and reach out by telling us your story through the Blog Page, throwing out what’s been bugging you lately on the Discussion Forum, or simply share facets of your life through pictures and videos. We’d love to hear from you!
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
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New Milestone for Living with Fibro and Life with Lupus Communities
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We achieved new milestones as Living with Fibro and Life with Lupuscommunities reach 1000+ members!
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Ben's Friends and Rare Genomics Podcast Interview Series
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Ben's Friends Patient Communities and partner organization Rare Genomics Institute (RareGenomics) will hold an hour-long interview with genomics experts on October 4th at 7-8 pm EST / 4-5 pm PST/ UK Midnight-1 am BST. The series will discuss technological advances in the area of rare genetic disorders and will feature a forum where you can field questions.
Later, a transcript of the interview and a link for a replay of the interview will be published in this community.
More details on this announcement on this page: Ben's Friends and RareGenomics Interview Series.
Please make sure to register your interest and questions via this invitation link .
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Twitter Chat
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for everyone who wants to learn from each other.
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Spanish Group Created
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New Communities Launched — Sjogren’s Syndrome Support and Lyme Disease Support Network
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Sjogren’s syndrome is a condition characterized by dryness in the mouth and eyes, as well as in other places that need moisture, such as the nose, throat and skin, that usually accompanies other autoimmune disease such as systemic lupus erythematosus (SLE) and fibromyalgia. Lyme disease, on the other hand, is an infection caused by a type of bacterium that is carried and transmitted by deer ticks to the humans and animals it bites.
Do you know anyone with these conditions? Invite them over to these sites so they’ll enjoy the same support you are getting.
AMYLOIDOSIS COMMUNITY HIGHLIGHTS
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Featured Content: Story of the Day
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Tracy's Story of the Day may as well make it as Story of the Month! The humorous account on this link has her dad Earl shrugging of a disturbing report from his chemo providers to return to doing laundry!
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Featured Member: Tracy
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Meet Tracy, one of the biggest daddy's girls you've ever met. Tracy is Earl's daughter. His father was diagnosed with Amyloidosis. Tracy is a pediatric occupational therapist and healthcare worker as well. Read how Tracy showers love and care to her family, especially to her Dad in so many ways, where each one can of us can relate.
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Picture of the Month
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JC’s picture is our hands down featured photo of the month!
"You Matter and You are Loved. "
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Community Stats:
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Number of Members as of September 1,2012 : 32
Traditionally, summer months are laid back with less activity online. But this last summer has been exceptionally exciting – thanks to your continued patronage of our communities!
Cheers everyone!
Ben