linkDear Friends and Family of AVM,

Rare disease awareness is on a steep rise as never before! This early, we want to tell everyone that key members of our team will be attending several events spread throughout 2013 in different countries to give talks on relevant topics around rare diseases. Truly something to look forward to!

Part of what they will be talking about is the impact patient communities make on orphan drug research and rare di.... Here’s a teaser for you.

Patient communities have, over the years, sent out a loud call to the powers-that-be to provide economic and regulatory incentives to encourage increased research and investment in the development of drugs for rare diseases — called ‘orphan drugs’. Today, research on orphan drugs are considered the cutting-edge for international developments in medicine, stretching treatment possibilities and expanding reach to previously marginalized patients.

To everyone’s benefit, including those of the general population, research on rare diseases resulted with new regulatory and policy perspectives, new drug discoveries (including those ‘stumbled upon’ for diseases less rare), innovative designs on business strategies and, more importantly, ‘customer’-oriented partnerships with patient groups and those at the point-of-care. The message being loud and clear: Research on rare diseases benefits everyone, not just those who suffer rare diseases!

And above all that, patient communities resulted in the emergence of empowered ‘super-patients’ of rare diseases lifting each other up and  righting things that are wrong!

It was YOU who made all these possible in 2012 and the years preceding it! These were of your doing and we applaud YOU for all these amazing developments!

IN THIS ISSUE

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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben’s Friends Partners with The Social Security Law Group

Members Who Blog

Share Your Story and Fan Voice Mailbox

Ben’s Friends Twitter Chat Schedule for December

Disclaimer Text on Community Main Page

Ben’s Friends Slideshow

AVM COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stats

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Welcome New Members

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There is power in numbers. Cliche, but it’s the incontrovertible truth! And joining this community is one of the best decisions you have made since being confronted with this rare condition. Now you have the power of a whole community that cares. Tap on this power source by connecting yourself to it securely. How?

Make your presence felt. Share your story on the Blog page. Another cliche: When in doubt, throw it out! Throw what’s bugging you on the Discussion/Forum page and discover the miracle which has endeared this community to many others like you. Post pictures and videos on the Media page as well and share your location on the Member map: It helps everyone to see you in context and get to know you better.

Have you subscribed to the BF Newsletter yet? Don’t worry, we will not clutter your mailbox with useless information or spam. So please do so by ticking that box on your profile information.

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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Ben’s Friends Partners with The Social Security Law Group

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We are extremely excited about our new partnership with The Social Security Law Group (SSLG). Since 1994, SSLG has represented tens of thousands of disabled Americans in their pursuit of Social Security Disability (SSDI) benefits. Their attorneys will advocate for you before Administrative Law Judges (ALJ) anywhere in the US. Please follow the link to SSLG’s website to contact them or to access other helpful information. Read more on this announcement from this press release.

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Members Who Blog

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Our community founder Ben Munoz invites you to post blogs, articles, infographs and other useful information you found on the Internet on the subject of ADD/ADHD, which we will feature on this site and Bensfriends.org. It’s your instant opportunity to make an imprint on the web! Check out more info on this link.

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Share Your Story and Fan Voice Mailbox

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Ben’s Friends Twitter Chat Schedule for December

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Disclaimer Text on Community Main Page

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Ben’s Friends Slideshow

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AVM COMMUNITY HIGHLIGHTS

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Featured Content: Since We Last Talked

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Brooke amplifies her call for help as she turns to the AVM community for emotional support. Let her know you care through your comments!

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Featured Member: Louisa

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Check out Louisa's profile! This Rhode Island AVM suvivor had a hemmorhage the day before Christmas of '07. Fortunately for her, and her lovely daughter Adria and grandaughter Charlottte, proton beam radiation worked!

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Picture of the Month

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Jeremiah from our Lyme disease support family took a picture of this butterfly, a symbol of rebirth and transformation. This ex-soldier can shoot! Check out his album.

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Community Stats:

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Number of Members as of December 1,2012 : 4,966

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It was as a very good year for Ben’s Friends and rare disease patient communities as a whole. All eyes on the horizon, as we look forward to making the next year, and the years that follow, a great one on top of the other.

Let us continue relentlessly and, hopefully through our concerted effort, we can find a world where rare diseases are not only manageable and treatable, but a thing of the past.

Ben