Our Patient Communities
Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition.
Active Communities
Our active patient communities provide a safe and supportive place for people affected by rare diseases and chronic conditions to connect with others who understand their experiences.
Arteriovenous Malformations (AVMs)
avmsurvivors.orgDefects of the circulatory system generally believed to arise during embryonic or fetal development or soon after birth. Those located in the brain or spinal cord can have especially widespread effects on the body.
Ataxia
livingwithataxia.orgOften used to describe a symptom of incoordination associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected — impacting the fingers, hands, arms, legs, body, speech, and eye movements.
Brain Aneurysm Support Community
bafsupport.orgA patient-to-patient support community for families affected by brain aneurysm. Sponsored by The Brain Aneurysm Foundation and operated by Ben’s Friends and volunteer moderators who have personally been affected by the condition.
Chiari Malformation
chiarisupport.orgStructural defects in the base of the skull and cerebellum — the part of the brain that controls balance. Usually present at birth, Chiari malformation occurs at the back of the head where the brain and spinal cord connect, causing the cerebellum to extend into the spinal canal.
Eagle Syndrome
livingwitheagle.orgA rare condition where an elongated temporal styloid process (more than 30mm) is in conflict with adjacent anatomical structures, causing pain and other symptoms.
Erythromelalgia (EM)
livingwitherythromelalgia.orgA rare neurovascular pain disorder that can cause redness and pain in all parts of the body, most frequently in extremities such as the hands and feet. Characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or nearly continuous. The specific underlying cause remains unknown.
Facial Pain Syndromes (Chronic)
livingwithfacialpain.orgChronic facial pain syndromes affect as much as 1% of the population. This community covers Trigeminal Neuralgia (TN), Glossopharyngeal Neuralgia (GPN), and other conditions including Atypical Facial Pain, Trigeminal Neuropathic Pain, and Persistent Idiopathic Facial Pain (PIFP) — supporting patients across the full spectrum of chronic facial pain.
Fibromyalgia
livingwithfibro.orgA disorder that may cause widespread pain in the muscles as well as joint stiffness, nerve pain, unrefreshing sleep, and exhaustion. Patients may also experience digestive disorders, balance problems, and mild cognitive impairment.
Polyneuropathy
livingwithpolyneuropathy.orgDamage or disease affecting peripheral nerves in roughly the same areas on both sides of the body, featuring weakness, numbness, pins and needles, and burning pain. Usually begins in the hands and feet and may progress to the arms, legs, and beyond. Related conditions include Guillain-Barré Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and Charcot-Marie-Tooth disease.
Psoriatic Arthritis (PsA)
livingwithpsoriaticarthritis.orgA type of inflammatory arthritis affecting people who have the chronic skin condition psoriasis. Symptoms include pain, swelling, or stiffness in one or more joints, pain in and around the feet and ankles, and nail changes such as pitting or separation from the nail bed.
Primary Sclerosing Cholangitis (PSC)
livingwithpsc.orgA liver disease in which the bile ducts progressively decrease in size due to inflammation and scarring. Bile accumulates within the liver, damaging liver cells. The disease frequently exists alongside inflammatory diseases of the colon, such as chronic ulcerative colitis. Affects both sexes, but is more common in men.
Former Communities
Some of our communities are no longer active discussion forums. We are grateful to the patients, families, caregivers, and volunteers who made these communities part of Ben’s Friends.