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词条 Ben's Friends
释义

  1. References

  2. External links

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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] 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 30+ online communities, each focused on a specific rare disease or chronic illness. The mission of Ben's Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. 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. ^{{cite web|last=Orn |first=Scott |url=http://blogs.hbr.org/2013/03/deliver-big-impact-on-a-small/ |title=Deliver Big Impact on a Small Budget - Scott Orn - Harvard Business Review |publisher=Blogs.hbr.org |date=2013-03-18 |accessdate=2013-12-17}}
2. ^{{cite web|url=https://techcrunch.com/2013/05/31/big-impact-on-a-small-budget-bens-friends-wants-to-build-a-web-mobile-support-network-for-every-rare-disease/ |title=Big Impact On A Small Budget: Ben’s Friends Wants To Build A Web & Mobile Support Network For Every Rare Disease |publisher=TechCrunch |date=2013-05-31 |accessdate=2013-12-17}}
3. ^{{cite web|url=http://www.chron.com/news/health/article/Med-student-starts-website-for-patients-with-rare-4543614.php |title=Med student starts website for patients with rare diseases - Houston Chronicle |publisher=Chron.com |date=2013-05-23 |accessdate=2013-12-17}}
4. ^{{cite web|url=http://www.bensfriends.org/ |title=Ben's Friends | Patient Support Communities for People with Rare Diseases |publisher=Bensfriends.org |date=2013-03-01 |accessdate=2013-12-17}}
5. ^{{cite web|url=http://www.bridgespan.org/getmedia/2e3147b3-939e-45b7-b7b2-dd7c959e1d9f/From-Start-up-to-Scale.pdf |accessdate=December 9, 2013 |deadurl=yes |archiveurl=https://web.archive.org/web/20140304212935/http://www.bridgespan.org/getmedia/2e3147b3-939e-45b7-b7b2-dd7c959e1d9f/From-Start-up-to-Scale.pdf |archivedate=March 4, 2014 }}
6. ^{{cite web|author=BCM Office of Communications |url=http://momentumblog.bcm.edu/2013/04/15/coping-through-connection-rare-disease-support-communities/ |title=Coping through connection: Rare disease support communities | Momentum - The Baylor College of Medicine Blog |publisher=Momentumblog.bcm.edu |date= |accessdate=2013-12-17}}
7. ^{{cite web|url=http://avmsurvivors.org |accessdate=December 9, 2013 |deadurl=yes |archiveurl=https://web.archive.org/web/20131105084617/http://www.avmsurvivors.org/ |archivedate=November 5, 2013 }}
8. ^{{cite web|url=http://livingwithtn.org |accessdate=December 9, 2013 |deadurl=yes |archiveurl=https://web.archive.org/web/20131203184257/http://www.livingwithtn.org/ |archivedate=December 3, 2013 }}
9. ^  {{dead link|date=February 2014}}
10. ^{{cite web|url=http://adrenoleukodystrophysupport.org/ |title=Adrenoleukodystrophy (ALD) Online Support Group |publisher=Adrenoleukodystrophysupport.org |date= |accessdate=2014-02-26}}
11. ^  {{dead link|date=February 2014}}
12. ^{{cite web|url=http://bafsupport.org |accessdate=December 9, 2013 |deadurl=yes |archiveurl=https://web.archive.org/web/20131113000750/http://www.bafsupport.org/ |archivedate=November 13, 2013 }}

External links

  • [https://www.forbes.com/sites/sarahmckinney/2014/03/01/this-29-year-old-had-a-brain-aneurism-you-wont-believe-what-he-did-next/ Forbes: Community is the Best Medicine]
  • Houston Chronicle: Med student starts website for patients with rare diseases
  • [https://techcrunch.com/2013/05/31/big-impact-on-a-small-budget-bens-friends-wants-to-build-a-web-mobile-support-network-for-every-rare-disease/ TechCrunch: Big Impact on a Small Budget]
  • [https://hbr.org/2013/03/deliver-big-impact-on-a-small Harvard Business Review: Deliver Big Impact On a Small Budget]
  • Kellogg Magazine: High Speed Social Impact
  • Lily Clinical Open Innovation: The Power of Community for Rare Disease Patients
  • Lily Clinical Open Innovation: Joining with Patients at the Center of Clinical Research

1 : Patients' organizations

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