What is Ben’s Friends?

BensFriends.org is a network of safe and supportive patient communities for anyone affected by a rare disease. BensFriends.org is recognized as a 501(c)(3) non-profit.

To learn more, please watch the video above then click here.

Our 1st E-Book is Now Available

BFApp2“We’re In This Together: Stories & Tips from Patients with Rare Diseases” can be found HERE.

Please forward to patients/family/friends affected by rare diseases.

As Seen In…



Ben’s Friends Mobile App Launched!

BFApp2We’re so proud to announce the release of the Ben’s Friends iPhone App!!! Go to the App Store and download it now. You can access all DownloadBFApp 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!

About Our Members 

47,000+ lives changed…and counting.

Read More…

What people are saying about BensFriends.org?

Are you a member who would like to share a testimonial? Email your story to testimonials@bensfriends.org

“Thankful for many things. But top on the list – is this group. You give me strength when I do t think I have any. You give me fight when I think I have tapped out. And thankful for friends across the country and around the world that I never would have had the great privledge to meet with out this group. I am thankful people had the initiative to start a group that provides so many support and help when you are at your lowest points. You are all an inspiration of strength and courage. You all give me more than I could ever give in return…Much love to all.” —Beeba (Chiari Support)

           “Thank you to everyone. I have been reading posts, blogs, all of it and it hasn’t failed me yet. There is always someone’s story that adds a little piece to this puzzle of pain, misery, confusion and, frustration that I have endured for a very long time….years actually. So I want to let everyone know that anything you post is certainly a gift to someone like me. Finally, I was able to make sense of things I have been going through. I have learned so much and I don’t feel alone…Thank you so very much!
” — WubbaBear (Life With Lupus)


           “I only got accepted to this site yesterday and already I feel at home. I hope that this will be good for me and my mom who also was accepted yesterday. We both have been through a lot in the past 5 years. I can’t believe it’s been 5 years already. It feels so recent but at the same time so long ago. I don’t know if that makes sense.  I’m very glad to have found this website and have already made friends. There is now another good things in my life.” — Cat D. (AVM Survivors)


“I am so thankful for this support group. I think one of the hardest things about Estherfibromyalgia is how debilitating it feels. With not sleeping, the pain, the foginess, everything makes you feel so isolated. I am so thankful I found this group though, everyone has been nothing but supportive and helpful especially when it is most needed. I just wanted to take a second to write this post and be grateful, there really is light in the midst of the darkness of this disease. Love and blessings to all!”
Esther  L. (Living with Fibromyalgia)


“Ben’s Friends is an amazing support group for people with rare conditions. I was diagnosed with a “inoperable” brainstem cavernous malformation. I had a life saving craniotomy March 1, 2013 in Phoenix Arizona by Dr. Robert Spetzler. Even tho I have a while to go, my recovery is doing better than expected. Never think you did everything you could…until you have done everything you could!” —Lisanne K. (AVM Survivors)


Read more testimonials from our Patient Testimonials page.

Read more from our collection of inspirational posts from across our family of patient communities at our Blogs page.

If you’d like to submit your testimonial, please email us at testimonials@bensfriends.org or share your inspirational stories with us either through email at stories@bensfriends.org or upload your video through our “Share your Story” page.