Dear Friends and Family of LivingWithCMT,
This has been a momentous month for our communities so far! As a collective network of rare disease patients, we have far exceeded our targets for the first half of the year. Activity within our individual sites has never been as robust as before, thanks to your participation in the discussions and your blog posts.
Cheers!
Ben
IN THIS ISSUE
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2. New Guillain Barre Support Community
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Welcome New Members
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New members have taken noticed and have signed up for our journey. Our warmest welcome to you, new members, from our online community of patients, families and caregivers! Yes, you have come to the right place to find much needed informative help and emotional support as you face the challenges of your rare condition. Through this site, we are able to share insight into everyone’s experiences, making it easier for everyone to understand peculiar needs and situations. Browse through our Discussions and Blog pages and meet people who are sincerely interested in your welfare.
Powered by Ben’s Friends, we are able to tap into valuable resources such as legal advocacy and information on insurance and patient rights, second opinion medical advise and raising funds for personal use.
There is strength in numbers! Know that we are also part of 30+ patient communities and 18000+ members assisted by Ben’s Friends.
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New Guillain Barre Support Community
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Ben’s Friends recently launched a new website for patients of the Guillian-Barre Syndrome, or GBS. The site, www.guillainbarresupport.org, is the latest rare disease patient community Ben’s Friends has helped create and we are very excited in its launching, as it is the first group that we started first on Facebook prior to a site creation.
Guillain Barre Syndrome is a serious disorder where the body's auto-immune system mistakenly attacks part of the nervous system, leading to nerve inflammation and muscle weakness. As may be true about your condition, little is also known about the syndrome or its cause. It often follows a minor infection and often signs of the original infection have disappeared before the symptoms of GBS begin.
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BensFriends.org Re-launch
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We redesigned our website to give it a fresh new look and to streamline its usage. Done on Wordpress, navigating through the site and posting comments and blogs has never been as easy. Migration to the new site has already commenced.
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The Butterfly Takes Flight
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Coinciding with our re-launch of a new, streamlined Ben’s Friends website, we also re-formatted our Butterfly Logo. The Butterfly is a fitting symbol to our support network as it denotes rebirth, transformation and gentleness. Its taking flight also symbolizes growth which just as fitting for our expansion efforts.
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Network Wide Surveys
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Living up to our promise of continuously improving our service, we embarked on two network-wide surveys to solicit input from our members.
The first one is being run in three weeks to determine how we are doing when it comes to our mission. This community survey will gather useful and insightful comments from members on a link and the feedback will be shared with everyone.
The second survey is pitched as part of a Tweetchat. John Stamler of our Moderators Group came up with the concept to help patients learn more about other communities and effect interaction among them. Look out for a schedule and link to be announced in our communities.
The output of these surveys will be collated to help us design better service that suits what our primary beneficiaries – rare disease patients – are looking for.
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Featured Blog
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We are amazed with the number of posts you shared this month on our Forums and Blogs sections, making our selection for a feature a little more difficult than usual. However, we selected one that we feel represents what our peer support communities are about.
Mary gives a heads up for the upcoming movie Bernadette, which features the real life story of a CMT patient. Find out more details on her blog.
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Community Stats:
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Number of Members as of June 1, 2012 :108
New Members Joined Last Month: 2
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Optimize Your Membership
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Optimize the enjoyment of your membership by taking full advantage of this site’s features. Bookmark this page on your Internet browser for quick viewing. Better yet, add this site to your homepage and share it on your Facebook and Twitter accounts. It only takes less than two minutes!
We are glad to have you with us on our journey to a better world for patients of rare diseases.
Cheers,
Your Community Moderators