How is a BensFriends.org Patient Community Different From a Facebook Support Group?
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
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“Some times in life, we come in contact with those who just don’t get it or understand what we struggle with. I have many times. I guess the ones that hurt the most is family members who sweep it under the rug and hide it. Being misunderstood goes for other folks too, who struggle with other afflictions. “
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“Thanks, yes I can tell and feel very welcomed. I’m looking forward to exchanging ideas and becoming friends with all here.”
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New member says:
“Thank you. I look forward to hearing everyone’s stories.”
Terrific blog post by and song lyrics by Annette about a superstar moderator, JC.
I have found Ability within my Disability.
By: J.C. Coyler
SUMMARY:
Are you coping with a disability?
A friend of mine, JC, has a very serious illness called Ataxia. The other day he sent me an email with today’s quote and said he had finally found “ability within his disability”. Everyone has a choice when facing challenging times and situations, JC made the choice to take the lemons he was dealt and make lemonade. He helps many people through his online support groups
Today’s song is for JC who is truly one of my heros. He found the strength to carry on and cast his fears aside to help others.
Today’s picture is one of my favorite pictures of JC and I. If you are facing a disabiity, look deep inside because there is a hero right inside you. JC is proof of it.
Life With Lupus - Online Support Group
New member says:
Thank you, this must be one of the most difficult things our family has had to endure. We are all so scared and confused. Most of the time his think doesn’t seem rational or logical. I know its his Lupus because his brain and body are weak and tired. I love him so very much and I feel so helpless and alone. My family and friends don’t really understand. I appreciate this group and hope to help as well as be strengthened by it. I am here to live (with this challenge) love(those who need it) and learn (from all those I Can). I need you all. Please help..
Life With Lupus - Online Support Group
New member says:
“Thank you for the welcome; i really wasn’t sure how i would get along on the site but its turning out fantastic as of yet. Thank you again for the welcome.”
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