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About the Butterfly Symbol
The butterfly is a fitting symbol to our support network as it denotes rebirth, transformation and gentleness. Its taking flight also symbolizes growth which is just as fitting for our mission to create a community for every rare disease.
Being a Better Person Through Ben’s Friends – Julie
Julie is a member who talks about her conditions and the volunteer work she does with Ben’s Friends has made her a better person. She is such a wonderful person with tremendous strength.
Elodie Found Great Source of Information about Synovial Sarcoma from Ben’s Friends
Elodie Espesset, member of Synovial Sarcoma Survivors , shared a testimonial video for BensFriends.org . Find out how she value the information she had from her support community.
BensFriends.org is a network of safe and supportive patient communities for anyone affected by a rare disease.
To learn more, please watch the video above then click here.
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Ben’s Friends Mobile App Launched!
We’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 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!
Are you a member who would like to share a testimonial? Email your story to firstname.lastname@example.org
“I found this forum out of desperation. I was very lonely and so very tired of living in silence with Chiari and everything that goes with it. We all know how exhausting dealing with the medical world can be. Even though I have a background in Managed Healthcare it is still unrelenting at times. Since I became a member I have found a second mother, sisters and brothers and life long friends.” –Tracy Z. (Chiari Support)
”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)
“Ben created this wonderful site and his twitter feed is filled with stories of hope over great challenges. His Ben’s Friends continues to expand this gift of love and support to more and more communities of folks sharing great health challenges. On thanksgiving, if we have a pulse and a smile, life is great. Ben’s growing support sites bring shared support and will continue to add new members to share the challenges and share the joys. Thanks to Ben, Shalon and all the others who manage this site and the bensfriends.org sites. The gift that keeps on giving…”–Sharyn I. (AVM Survivors)
“I am so thankful for this support group. I think one of the hardest things about fibromyalgia 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 from our collection of inspirational posts from across our family of patient communities atour Blogs page.
If you’d like to submit your testimonial, please email us at email@example.com or share your inspirational stories with us either through email at firstname.lastname@example.org or upload your video through our “Share your Story” page.
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4 Quick Ways You Can Help
1. Tell a friend or relative that we may have a community for them. Our communities are listed on the left side of this page.