Ben's Friends

Living With Ataxia - Online Support Group

Sun, 27 May 2012 09:53:00 -0700

New member says:

“Thank you for the warm welcome. Really hoping to be a big help to others on here.”

Living With Ataxia - Online Support Group

Living With Fibromyalgia - Online Support Group

Sun, 27 May 2012 09:52:28 -0700

New member says:

“Thank you…Glad to be here.”

Living With Fibromyalgia - Online Support Group

Living with Psoriatic Arthritis (PsA) - Online Support Group

Sat, 26 May 2012 13:53:43 -0700

New member says:

“Thank you for the welcome.”

Living with Psoriatic Arthritis (PsA) - Online Support Group

Living With Fibromyalgia - Online Support Group

Sat, 26 May 2012 09:50:43 -0700

New member says:

“Thanks for the warm welcome. Once i get used to the site i will be happy. Many thank you.”

Living With Fibromyalgia - Online Support Group

Life With Lupus - Online Support Group

Fri, 25 May 2012 09:45:24 -0700

New member says:

“Thanks for the welcome. I will check out the Fibro website as well. All of this is new to me and just finding out today it’s still has not set in. Found this site by chance through a search and so glad I did.”

Life With Lupus - Online Support Group

Living With CIDP - Online Support Group

Thu, 24 May 2012 18:45:36 -0700

New member says:

“Thank you!”

Living With CIDP - Online Support Group

Living With Fibromyalgia - Online Support Group

Thu, 24 May 2012 18:20:00 -0700

New member says:

“Thanks! for creating a site like this. I joined the group to find and share tips to improve my life. “

Living With Fibromyalgia - Online Support Group

Living With Erythromelalgia Online Support Group

Thu, 24 May 2012 18:19:25 -0700

New member says:

“Hi Thanks for the lovely welcome : )”

Living With Erythromelalgia Online Support Group

Lindsey is a very special AVM Survivor and gives back to the...

Thu, 24 May 2012 09:56:32 -0700

Lindsey is a very special AVM Survivor and gives back to the AVM community by making Brainbows. This is Lindsey’s story!

On behalf of Ben’s Friends, congratulations on all of your success Lindsey!

Glossopharyngeal Neuralgia (GPN) Support Group

Wed, 23 May 2012 21:12:44 -0700

New Member of Glossopharyngeal Neuralgia (GPN) Support Group Says:

“Thank you for inviting me to this support group. I have been busy reading everyone’s comments and feel like it is a great place to gain information and support. I would also like to contribute as time goes on, and hopefully help others in what they may experiencing.”

Eosinophilic Esophagitis Support Group

Tue, 22 May 2012 22:52:09 -0700

Eosinophilic Esophagitis Support Group:

New Group started for Eosinophilic Esophagitis

Living With Erythromelalgia Online Support Group

Tue, 22 May 2012 09:51:25 -0700

New member says:

“Thanks for the welcome. Good to know you are all out there.”

Living With Erythromelalgia Online Support Group

Life With ADD Taking Off

Mon, 21 May 2012 15:21:33 -0700

Ben’s Friends (@bensfriends) support site for ADD (http://www.lifewithadd.org) taking off. Thx to Debbie & Abby for being awesome moderators! #add

Living With Ataxia - Online Support Group

Mon, 21 May 2012 10:14:43 -0700

New member says:

” Thanks. I hope this is what I need.”

Living With Ataxia - Online Support Group

How is a BensFriends.org Patient Community Different From a Facebook Support Group?

Sun, 20 May 2012 12:50:08 -0700

A member of our Psoriatic Arthritis patient community recently posted a message titled “Who Needs Facebook…This is the Place for Me.”

http://www.livingwithpsoriaticarthritis.org/forum/topics/who-needs-…

It emphasized to me some important differences between a Facebook support group and a BensFriends.org patient community. Facebook-only support groups are always going to grow faster b/c there are already hundreds of millions of users on Facebook. If nothing else is available, I think Facebook-only support groups are a good option.

However, since we’ve been running patient communities for 4 years now, we’ve seen that once a BensFriends.org patient community reaches critical mass, members prefer our patient communities over Facebook-only support groups. Our BensFriends.org members tend to be much more active on our community than members of a Facebook-only support group. Why is that? How are we different?

http://www.livingwithpsoriaticarthritis.org/forum/topics/who-needs-…

Here’s how I think a BensFriends.org patient community is different from a Facebook-only support group:

1. We Know How to Attract and Develop Amazing Moderators

Our awesome moderators create a special sense of community and family. I say it all the time, but it’s absolutely true. Members come back NOT because the web site has more features or is easier to use, but because our moderators really care and it shows.

2. We Know How To Run Patient Communities

Running 30+ patient communities, we are able to see things that a moderator of one facebook group might not see. We can teach someone how to be a great moderator. We know what members might want, depending on their condition. We know how running a small community is different from running a large community. Sometimes, life happens and a sole moderator can not be lead the group forever, so it’s important to have a great team in place.

3. We Can Offer More Than Support

One of the unexpected consequences of the publicity that has followed our jump in traffic this year has been that companies and organizations have approached us wanting to partner with us. This is great because we can offer more to our members now.

In 2012, for the first time ever, we’ve been able to provide free legal help for members (Advocacy for Patients), free medical consultations (2nd.md),fundraising campaigns to help cover medical expenses or raise money for charity (GoFundMe.com), free customized medical information (PatientPower.info, SavantMD.com), free genetic counseling (Rare Genomics Institute), and more to come. All of this is possible because we bring together many rare conditions under one umbrella.

Thoughts? How can we do even more to help patients? All new ideas are welcome.

—Ben

ben@bensfriends.org

Uncertain About Fibromyalgia

Fri, 18 May 2012 08:36:50 -0700

Uncertain About Fibromyalgia:

Wonderful post about Fibromyalgia Support

Support Amyloid Disease

Fri, 18 May 2012 01:00:40 -0700

Support Amyloid Disease:

Terrific post by Louisa on Amyloid Support

In My World it is hard to get people to see who I am past my wheelchair. It is hard to have real, meaningful relationships with boys. It is hard getting around on my own and I can’t do some of the thi - Living With Ataxia - Online Support Group

Thu, 17 May 2012 23:25:20 -0700

In My World it is hard to get people to see who I am past my wheelchair. It is hard to have real, meaningful relationships with boys. It is hard getting around on my own and I can’t do some of the thi - Living With Ataxia - Online Support Group

Living With Fibromyalgia - Online Support Group

Thu, 17 May 2012 22:01:38 -0700

New member says:

“Thank you.”

Living With Fibromyalgia - Online Support Group

"When I hear, “If it isn’t broke don’t fix it” I think, ” If it isn’t broke doesn’t mean you can’t..."

Thu, 17 May 2012 13:15:36 -0700

“When I hear, “If it isn’t broke don’t fix it” I think, ” If it isn’t broke doesn’t mean you can’t make it better””

- John “JC” Colyer (via jccolyer)