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Ben's Friends is an American
non-profit organization A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...
that serves people with
rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financi ...
s. It was founded in 2007 by Ben Munoz and Scott Orn and was granted
501(c)(3) A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of ...
nonprofit status on February 9, 2014. It is headquartered in
Austin, Texas Austin ( ) is the List of capitals in the United States, capital city of the U.S. state of Texas. It is the county seat and most populous city of Travis County, Texas, Travis County, with portions extending into Hays County, Texas, Hays and W ...
. Ben's Friends runs over 30 online communities, each focused on a specific rare disease or
chronic illness A chronic condition (also known as chronic disease or chronic illness) is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term ''chronic'' is often applied when the ...
. 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. The organization was founded in 2007 by Ben Munoz and Scott Orn during Munoz's recovery from a rare brain
aneurysm An aneurysm is an outward :wikt:bulge, bulging, likened to a bubble or balloon, caused by a localized, abnormal, weak spot on a blood vessel wall. Aneurysms may be a result of a hereditary condition or an acquired disease. Aneurysms can also b ...
caused by an
arteriovenous malformation An arteriovenous malformation (AVM) is an abnormal connection between arteries and veins, bypassing the capillary system. Usually congenital, this vascular anomaly is widely known because of its occurrence in the central nervous system (usually ...
(AVM). 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. A few of the larger Ben's Friends communities: *AVM *
Trigeminal neuralgia Trigeminal neuralgia (TN or TGN), also called Fothergill disease, tic douloureux, trifacial neuralgia, is a chronic pain, long-term pain disorder that affects the trigeminal nerve, the nerve responsible for sensation in the face and motor funct ...
*
Ataxia Ataxia (from Greek α- negative prefix+ -τάξις rder= "lack of order") is a neurological sign consisting of lack of voluntary coordination of muscle movements that can include gait abnormality, speech changes, and abnormalities in e ...
International *
Adrenoleukodystrophy Adrenoleukodystrophy (ALD) is a genetic disorder, disease linked to the X chromosome. It is a result of fatty acid buildup caused by failure of peroxisome#Metabolic functions, peroxisomal fatty acid beta oxidation which results in the accumulation ...
(ALD) *
Fibromyalgia Fibromyalgia (FM) is a functional somatic syndrome with symptoms of widespread chronic pain, accompanied by fatigue, sleep disturbance including awakening unrefreshed, and Cognitive deficit, cognitive symptoms. Other symptoms can include he ...
*Brain
aneurysm An aneurysm is an outward :wikt:bulge, bulging, likened to a bubble or balloon, caused by a localized, abnormal, weak spot on a blood vessel wall. Aneurysms may be a result of a hereditary condition or an acquired disease. Aneurysms can also b ...


References

{{Reflist Patients' organizations Rare disease organizations