Dear Friends and Family of Living With Narcolepsy,
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 disease patient empowerment. 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
-———————————————————————————————————
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
Ben’s Friends Partners with The Social Security Law Group
Share Your Story and Fan Voice Mailbox
Ben’s Friends Twitter Chat Schedule for December
Disclaimer Text on Community Main Page
LWN COMMUNITY HIGHLIGHTS
-———————————————————————————————————
Welcome New Members
-———————————————————————————————————
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.
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
-———————————————————————————————————
Ben’s Friends Partners with The Social Security Law Group
-———————————————————————————————————
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.
-———————————————————————————————————
Members Who Blog
-———————————————————————————————————
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 Narcolepsy, 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.
-———————————————————————————————————
Share Your Story and Fan Voice Mailbox
-———————————————————————————————————
You asked, and we listened. Now you can express yourselves through video and submit it on BenFriends.org Share Your Story tab. You can submit a short (60-seconds or less) appreciation note to our funders, tell us how you feel about the community or your favorite community feature, even a simple greeting will be great!
If a video note is not possible, you can always use our “Share-Your-Story” Fan Voice Mailbox, 1-888-■■■■■■■■.
-———————————————————————————————————
Ben’s Friends Twitter Chat Schedule for December
-———————————————————————————————————
Don’t miss the fun on our next Twitter-chat sessions slated on these schedules:
- Thursday, December 13, 2012 2PM EST/11AM PST / 7PM UK Time
- Sunday, December 30, 2012 1PM EST/10AM PST / 6PM UK Time
Here is how you can participate.
-———————————————————————————————————
Disclaimer Text on Community Main Page
-———————————————————————————————————
Have you read the Disclaimer on the main page of this community? It is an expression of our concern for your well-being and care. This community provides a forum where patients and caregivers can freely and independently share their thoughts and experiences with regards to their treatment and care. This way patients, friends, and family could learn more about the condition, and be empowered by connecting with fellow patients. However, we also believe that qualified professional advise should never be disregarded. So please take note of the brief but important information which is posted on the Disclaimer.
-———————————————————————————————————
Ben’s Friends Slideshow
-———————————————————————————————————
We’re featuring pictures of interest on our BF Main Page slider! It’s a new feature, and we believe that your real life pictures deserve this space more than what we could ever think about. If your picture reflects the Ben’s Friends spirit and the values that emanate from it, submit it to ■■■■■■■■■■■■■■■■■■■■ with a brief description and we will include it in the slideshow.
LWN COMMUNITY HIGHLIGHTS
-———————————————————————————————————
Featured Content: Narcoleptic Thanksgiving
-———————————————————————————————————
Copingwithnarcolepsy lets us in to their family living room on Thanksgiving, sharing how she spent the holiday half awake and half asleep--'bizarre' yet amusing! Check it out.
-———————————————————————————————————
Featured Member: Ranger
-———————————————————————————————————
Ranger lives in the Twilight Zone... Well, not really. But it's the way this State College, PA describes what binds this family together--narcolepsy. He's got some great pictures to boot! Check them out on his page.
-———————————————————————————————————
Picture of the Month
-———————————————————————————————————
There's more where these come from! Check out these sami boot from Ranger's photo album depicting life in his Pennsylvania ranch.
———————————————————————————————————
Community Stats:
-———————————————————————————————————
Number of Members as of December 1,2012 : 52
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