Ben's Friends

American non-profit organization

Ben's Friends is an American non-profit organization that serves people with rare diseases.[1][2] It was founded in 2007 by Ben Munoz and Scott Orn[3] and was granted 501(c)(3) nonprofit status on February 9, 2014.[4] It is headquartered in Austin, Texas.

Ben's Friends runs over 30 online communities, each focused on a specific rare disease or chronic illness. Its mission is to provide patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, a place to connect with others. Ben's Friends communities are managed by approximately 100 volunteer moderators, most of whom are patients themselves.[2][5] 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).[3] In early 2008, Munoz and Orn started two more communities, Living With Ataxia and Living With Trigeminal Neuralgia. Ben's Friends has served over 50,000 members, with more than 100,000 online visitors to the communities each month.[6]

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

  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. ^ a b "Med student starts website for patients with rare diseases - Houston Chronicle". Chron.com. 2013-05-23. Retrieved 2013-12-17.
  4. ^ "Ben's Friends | Patient Support Communities for People with Rare Diseases". Bensfriends.org. 2013-03-01. Retrieved 2013-12-17.
  5. ^ "From Start-up to Scale – Conversations from the Harvard Business Review" (PDF). Bridgespan Insight Center on Scaling Social Impact. Archived from the original (PDF) on March 4, 2014. Retrieved December 9, 2013.
  6. ^ 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. ^ "We are AVM survivors, here for your support". AVM Survivors Network. Archived from the original on November 5, 2013. Retrieved December 9, 2013.
  8. ^ "We are patients living with Trigeminal Neuralgia, here for your support". Living with TN. Archived from the original on December 3, 2013. Retrieved December 9, 2013.
  9. ^ "Ataxia Support". LivingWithAtaxia.org.
  10. ^ "Adrenoleukodystrophy (ALD) Online Support Group". Adrenoleukodystrophysupport.org. Retrieved 2014-02-26.
  11. ^ "Living With Fibromyalgia - Online Support Group".
  12. ^ "Brain Aneurysm Support Community". The Brain Aneurysm Foundation. Archived from the original on November 13, 2013. Retrieved December 9, 2013.