We build patient communities for people with rare diseases. Find us at BensFriends.org and email us your amazing stories at stories@bensfriends.org. var _gaq = _gaq || []; _gaq.push([‘_setAccount’, ‘UA-3820549-26’]); _gaq.push([‘_trackPageview’]); (function() { var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true; ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’; var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s); })();Tumblr (3.0; @bensfriends)http://blog.bensfriends.org/““It’s simple … go the extra mile and you will stand out from the crowd.””<br/><br/> - <em> Robin Crow (via <a class="tumblr_blog" href="http://jccolyer.tumblr.com/" target="_blank">jccolyer</a>)</em>http://blog.bensfriends.org/post/17897574457http://blog.bensfriends.org/post/17897574457Sun, 19 Feb 2012 11:39:02 -0800<p>New member says:</p> <p>“Hi.Thanks for your welcome,bfn. “</p> <p><a href="http://www.livingwithataxia.org" target="_blank"><strong class="gmail_sendername">Living With Ataxia - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17891928358http://blog.bensfriends.org/post/17891928358Sun, 19 Feb 2012 10:00:05 -0800Living With Ataxia - Online Support GroupAtaxia<p>New member says:</p> <p>” Thank you! Glad to be here! “</p> <p><a href="http://www.lifewithlupus.org/" target="_blank"><strong class="gmail_sendername">Life With Lupus - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17831200020http://blog.bensfriends.org/post/17831200020Sat, 18 Feb 2012 10:01:05 -0800Life With Lupus - Online Support GroupLupus<a href="http://jccolyer.tumblr.com/post/17779160207/bens-friends-rare-diseases-community-february-2012">Trials and Tribute: Ben's Friends Rare Diseases Community - February 2012 Monthly Newsletter</a>: <p><a class="tumblr_blog" href="http://jccolyer.tumblr.com/post/17779160207/bens-friends-rare-diseases-community-february-2012" target="_blank">jccolyer</a>:</p> <blockquote> <p><img src="http://media.tumblr.com/tumblr_lzk0ktOlei1qde3ig.jpg"/></p> <span><span><strong>In this issue</strong></span></span><br/><a href="http://us2.campaign-archive2.com/?u=e67e56489d47f7df8e223cbc9&id=e77224af2e&e=149d319e08#Title%201" target="_blank">Ben’s Friends & Rare Disease Day</a><br/><a href="http://us2.campaign-archive2.com/?u=e67e56489d47f7df8e223cbc9&id=e77224af2e&e=149d319e08#Title%202" target="_blank">Newest Communities</a><br/><a href="http://us2.campaign-archive2.com/?u=e67e56489d47f7df8e223cbc9&id=e77224af2e&e=149d319e08#Feature" target="_blank">Featured Member of the Month</a><br/><br/><strong>Ben’s Friends & Rare Disease Day</strong><br/><p><img height="58" src="http://gallery.mailchimp.com/e67e56489d47f7df8e223cbc9/files/rare_disease_day.1.png" width="400"/><br/>Rare Disease Day is February 29th (very soon!). We’re pleased to announce that we are now part of a large consortium of non-profits, foundations,…</p> </blockquote>http://blog.bensfriends.org/post/17814640783http://blog.bensfriends.org/post/17814640783Sat, 18 Feb 2012 01:16:29 -0800<p>New member says:</p> <p>“Thanks. I’m glad to here. “</p> <p><a href="Fwd:%20AJB%20added%20a%20comment%20to%20your%20profile%20on%20Living%20With%20Erythromelalgia%20Inbox%20%09x%20Scott%20Orn%20scott.orn@gmail.com%20%09%20Feb%2013%20(3%20days%20ago)%20%09%09%20to%20me%20for%20the%20blog%20%20----------%20Forwarded%20message%20----------%20From:%20Living%20With%20Erythromelalgia%20<mail@livingwitherythromelalgia.org>%20Date:%20Sun,%20Feb%2012,%202012%20at%2012:36%20PM%20Subject:%20AJB%20added%20a%20comment%20to%20your%20profile%20on%20Living%20With%20Erythromelalgia%20To:%20Scott%20Orn%20<scott.orn@gmail.com>%20%20%20AJB%20added%20a%20comment%20to%20your%20profile%20on%20Living%20With%20Erythromelalgia%20%20------------%20Thanks%20scot%20I%20am%20glad%20to%20be%20here%20------------%20%20To%20view%20the%20full%20comment,%20visit:%20http://www.livingwitherythromelalgia.org/profiles/comment/list?attachedToType=User&attachedTo=0mswga4upnmv6&commentId=6418999%3AComment%3A17137&xgsi=1&xg_source=msg_com_profile%20%20To%20reply%20to%20the%20comment,%20visit:%20http://www.livingwitherythromelalgia.org/profile/AJB?xgsi=1#com%20%20--%20To%20disable%20email%20notifications%20for%20comments%20on%20your%20profile,%20go%20to:%20http://www.livingwitherythromelalgia.org/profile/ScottOrn?xgsi=1&unfollowMyPage=1&xg_source=msg_com_profile%20%20To%20control%20which%20emails%20you%20receive%20on%20Living%20With%20Erythromelalgia,%20go%20to:%20http://www.livingwitherythromelalgia.org/?xgo=Yq1I37XoeMfomh4IDzVFPNCfqfcrIKeDlfyTQRhiC-tBr3xcPcuLjQ&xg_source=msg_com_profile%20%09%09%09%09%09%20%09%20Click%20here%20to%20Reply%20or%20Forward%20Citrix%20XenApp%20training%20Ads%20%20Why%20this%20ad?%20Want%20to%20run%20the%20Citrix%20farm%20at%20work%20Pay-as-you%20go%20XenApp%20videos%20www.xenappexpertin30days.com%20" target="_blank"><strong>Living With Erythromelalgia Support Group</strong></a></p>http://blog.bensfriends.org/post/17773106551http://blog.bensfriends.org/post/17773106551Fri, 17 Feb 2012 10:00:05 -0800Living With Erythromelalgia Support GroupErythromelalgia<img src="http://29.media.tumblr.com/tumblr_lzio9pJMNn1qzwolbo1_400.jpg"/><br/><br/><p>Wonderful blog on Chiari by our friend <a href="http://chiari-life.blogspot.com/" target="_blank">Alicia - Chiari Life</a>.</p> <p>Alicia a tremendous advocate for <a href="http://www.chiarisupport.org/" target="_blank">Chiari Malformation Support</a> and is a volunteer moderator. She helps make the network go and brings comfort and support to over 700 people (and growing!). </p>http://blog.bensfriends.org/post/17746650373http://blog.bensfriends.org/post/17746650373Thu, 16 Feb 2012 18:58:37 -0800<p>New member says:</p> <p>                                           “Thanks<br/><br/>                        so worn out from relentless attacks<br/><br/>        can’t tell you how great it is to find some people that understand<br/><br/>                                 hope all is well with you<br/><br/>                                    kindest regards”</p> <p><a href="http://www.livingwithtn.org/" target="_blank"><strong class="gmail_sendername">Trigeminal Neuralgia (TN) - Online Support Group</strong></a> <span> </span></p>http://blog.bensfriends.org/post/17702739420http://blog.bensfriends.org/post/17702739420Wed, 15 Feb 2012 22:57:59 -0800Trigeminal Neuralgia (TN) - Online Support GroupTN<p>” <span>The world of unusual illnesses and diseases has remained a mystery too long. Thanks for shedding some light and making those who deal with pain/sickness on a daily basis find a community that understands.</span>” - Maria</p>http://blog.bensfriends.org/post/17702511970http://blog.bensfriends.org/post/17702511970Wed, 15 Feb 2012 22:48:58 -0800<p>New member says:</p> <p>“Thanks for the welcome, I’ve been looking for an EM forum for some time … finally found this one!”</p> <p><a href="http://www.livingwitherythromelalgia.org" target="_blank"><strong>Living With Erythromelalgia Support Group</strong></a></p>http://blog.bensfriends.org/post/17512418636http://blog.bensfriends.org/post/17512418636Sun, 12 Feb 2012 14:00:05 -0800Living With Erythromelalgia Support GroupErythromelalgia<p>New member says:</p> <p>“Thank you for helping to make this site possible. I need to get into a support group badly as no one around here has FMS and it’s so difficult to get out of the house sometimes to go to the meetings over an hour away.”</p> <p><a href="http://www.livingwithfibro.org/" target="_blank"><strong>Living With Fibromyalgia - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17497283640http://blog.bensfriends.org/post/17497283640Sun, 12 Feb 2012 10:00:06 -0800Living With Fibromyalgia - Online Support GroupFibromyalgia<a href="http://jccolyer.tumblr.com/post/17421690044/patient-support-communities-powered-by-bensfriends-org">Trials and Tribute: Patient Support Communities Powered by Bensfriends.org</a>: <p><a class="tumblr_blog" href="http://jccolyer.tumblr.com/post/17421690044/patient-support-communities-powered-by-bensfriends-org" target="_blank">jccolyer</a>:</p> <blockquote> <p><em>These communities are a part of the Ben’s Friends network of patient communities. Learn more at <a href="http://www.bensfriends.org" target="_blank">bensfriends.org</a>.</em><br/><br/><strong>Patient Communities</strong><br/><a href="http://acutedisseminatedencephalomyelitis.org/" target="_blank">Acute Disseminated Encephalomyelitis (ADEM)</a><br/><a href="http://www.lifewithadd.org/" target="_blank">ADHD/ADD</a><br/><a href="http://www.aldsupport.org/" target="_blank">Adrenoleukodystrophy (ALD)</a><br/><a href="http://www.avmsurvivors.org/" target="_blank">Arteriovenous Malformation (AVM)</a><br/><a href="http://www.livingwithataxia.org/" target="_blank">Ataxia (International)</a><br/><a href="http://americanataxianetworking.ning.com/" target="_blank">…</a></p> </blockquote>http://blog.bensfriends.org/post/17452582059http://blog.bensfriends.org/post/17452582059Sat, 11 Feb 2012 15:15:06 -0800<p>New member says:</p> <p>“Thanks for the warm welcome, although i am the only member from the middle east, yet i can see that PsA is treating us all the same :) “</p> <p><a href="http://www.livingwithpsoriaticarthritis.org" target="_blank"><strong class="gmail_sendername">Living with Psoriatic Arthritis (PsA) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17448411262http://blog.bensfriends.org/post/17448411262Sat, 11 Feb 2012 14:00:05 -0800Living with Psoriatic Arthritis (PsA) - Online Support GroupPsA<p>New member says:</p> <p>“Thank you for the contact. I can see there are a lot of great people on this site, quite amazing really. I am looking forward to sharing any thing I have learned that may help any one else with this condition and also learning what every may help be in dealing with it. I want to THANK YOU and Ben for all of the work that went in to making this site possible and helping so many of us, past, present and future.”</p> <p><a href="http://www.livingwithtn.org/" target="_blank"><strong>Trigeminal Neuralgia (TN) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17434890405http://blog.bensfriends.org/post/17434890405Sat, 11 Feb 2012 10:00:06 -0800Trigeminal Neuralgia (TN) - Online Support GroupTN<p>New member says:</p> <p>“Thanks! Hope to find parents with some experience on the disease and symptoms.”</p> <p><a href="http://www.livingwithpsc.org/" target="_blank"><strong class="gmail_sendername">Primary Sclerosing Cholangitis (PSC) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17428637327http://blog.bensfriends.org/post/17428637327Sat, 11 Feb 2012 08:00:05 -0800Primary Sclerosing Cholangitis (PSC) - Online Support GroupPSC<p>New member says:</p> <p>“The kindness, compassion and good humor of the group has buoyed me up today while waiting to be accepted as a member.  I very much look forward to getting to know you better.  It’s kind of you to offer a personal welcome to a stranger.  Thanks.”</p> <p><a href="http://www.livingwithpsoriaticarthritis.org/" target="_blank"><strong>Living with Psoriatic Arthritis (PsA) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17378135701http://blog.bensfriends.org/post/17378135701Fri, 10 Feb 2012 10:00:06 -0800Living with Psoriatic Arthritis (PsA) - Online Support GroupPsA<p>New member says:</p> <p>“Thanks!I sometimes feel that I am the only person with PA so it will be helpful to share experiences.”</p> <p><a href="http://www.livingwithpsoriaticarthritis.org" target="_blank"><strong class="gmail_sendername">Living with Psoriatic Arthritis (PsA) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17347154025http://blog.bensfriends.org/post/17347154025Thu, 09 Feb 2012 17:15:45 -0800Living with Psoriatic Arthritis (PsA) - Online Support GroupPsA<p>New member says:</p> <p>“Thank you so much for the welcome.  I am so looking forward to building friendships with people who are walking the same path as I am.”</p> <p><a href="http://www.chiarisupport.org/" target="_blank"><strong>Chiari Malformation - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17346958793http://blog.bensfriends.org/post/17346958793Thu, 09 Feb 2012 17:12:28 -0800Chiari Malformation - Online Support GroupChiari Malformation<a href="http://jccolyer.tumblr.com/post/17274554845/lifewithfabry-we-are-patients-living-with-fabry-we-are">Trials and Tribute: LifeWithFabry-We are patients living with fabry, we are here for your support.</a>: <p>Great overview of our new community <em><a href="http://lifewithfabry.org/" target="_blank">LifeWithFabry</a> by JC below!</em></p> <p><a class="tumblr_blog" href="http://jccolyer.tumblr.com/post/17274554845/lifewithfabry-we-are-patients-living-with-fabry-we-are" target="_blank">jccolyer</a>:</p> <blockquote> <p><strong>What is LifewithFabry.org?</strong></p> <p>LifewithFabry.org is a dedicated patient-to-patient support community for families affected by Fabry Disease. LifewithFabry.org is powered by <a href="http://www.bensfriends.org/" target="_blank">BensFriends.org</a>, patient support communities for rare diseases, and is run by volunteer moderators who have been affected…</p> </blockquote>http://blog.bensfriends.org/post/17331982607http://blog.bensfriends.org/post/17331982607Thu, 09 Feb 2012 13:00:03 -0800<p>New member says:</p> <p>” Thanks for the immediate welcome!  I saw your profile in the chat box when I was finishing my profile and uploading my photo.  Sorry I didn’t get a chance to thank you before you signed off.  Your welcome meant a lot  =D “</p> <p><a href="http://www.livingwithataxia.org/" target="_blank"><strong>Living With Ataxia - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17324610495http://blog.bensfriends.org/post/17324610495Thu, 09 Feb 2012 10:00:05 -0800Living With Ataxia - Online Support GroupAtaxia<p>New member says:</p> <p>“Thank you! I am so happy I found this group!! I have tons of questions so there will likely be a ton of forums :) “</p> <p><a href="http://www.livingwithvwd.org" target="_blank"><strong class="gmail_sendername">Von Willebrand’s Disease (VWD) - Online Support Group</strong></a></p>http://blog.bensfriends.org/post/17243645987http://blog.bensfriends.org/post/17243645987Tue, 07 Feb 2012 18:30:16 -0800Von Willebrand's Disease (VWD) - Online Support GroupVWD