Ben's Friends

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Ben’s Friends is an American 501(c)(3) non profit organization that operates free, online patient support communities for people with rare diseases.[1][2] The organization, headquartered in Houston, Texas, was granted 501(c)(3) nonprofit status on February 9, 2014. [3] Ben’s Friends runs 35 online communities, each focused on a specific rare disease. The communities bring patients and loved ones with the same rare disease together from across the world. The communities are managed by over 200 volunteer moderators that volunteer their time to give back to fellow patients.[2][4] The organization was founded in 2007 by Ben Munoz and Scott Orn during Munoz’s recovery from a rare brain aneurysm caused by an Arteriovenous malformation (AVM).[5] While Munoz survived, he struggled during his recovery, often dealing with loneliness and depression because he was unable to find other AVM patients. He created the first Ben’s Friends community, AVM Survivors in September 2007. As the site grew and Munoz was able to connect with other patients, he felt better about himself and the chances of full recovery. In early 2008, Munoz and Orn started two more communities, Living With Ataxia and Living With Trigeminal Neuralgia. The team has continued to start communities and now serves 35 different conditions.[6] Ben’s Friends Board of Directors is composed of Munoz and Orn, along with Eric Kroll, Haley Gallant and John Stamler.

A few of the larger Ben’s Friends Communities:

  • AVM[7]
  • Trigeminal Neuralgia[8]
  • Ataxia International[9]
  • Adrenoleukodystrophy (ALD)[10]
  • Fibromyalgia[11]
  • Brain Aneurysm[12]

References[edit]

  1. ^ Orn, Scott (2013-03-18). "Deliver Big Impact on a Small Budget - Scott Orn - Harvard Business Review". Blogs.hbr.org. Retrieved 2013-12-17. 
  2. ^ a b "Big Impact On A Small Budget: Ben’s Friends Wants To Build A Web & Mobile Support Network For Every Rare Disease". TechCrunch. 2013-05-31. Retrieved 2013-12-17. 
  3. ^ "Ben's Friends | Patient Support Communities for People with Rare Diseases". Bensfriends.org. 2013-03-01. Retrieved 2013-12-17. 
  4. ^ [1][dead link]
  5. ^ "Med student starts website for patients with rare diseases - Houston Chronicle". Chron.com. 2013-05-23. Retrieved 2013-12-17. 
  6. ^ by BCM Office of Communications. "Coping through connection: Rare disease support communities | Momentum - The Baylor College of Medicine Blog". Momentumblog.bcm.edu. Retrieved 2013-12-17. 
  7. ^ [2][dead link]
  8. ^ [3][dead link]
  9. ^ [4][dead link]
  10. ^ "Adrenoleukodystrophy (ALD) Online Support Group". Adrenoleukodystrophysupport.org. Retrieved 2014-02-26. 
  11. ^ [5][dead link]
  12. ^ [6][dead link]

External links[edit]