Also known as primary adrenal insufficiency and hypocortisolism, Addison’s disease is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands — too little cortisol and often insufficient levels of aldosterone as well.

A neurological condition characterized by a brief but intense attack of inflammation in the brain and spinal cord that damages myelin, the protective covering of nerve fibers. Usually occurs following a viral infection but may appear following vaccination, bacterial or parasitic infection, or even spontaneously. Similar to multiple sclerosis, it involves autoimmune demyelination.

A condition involving inattentiveness, hyperactivity, impulsivity, or executive functioning challenges. Individuals with ADHD may find it much more difficult to focus on tasks, control their impulses, or remain still. ADHDers are also known for creativity, out-of-the-box thinking, and unique problem-solving abilities.

A rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of nerve impulses, leading to significant disability.

Defects 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.

Often 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.

A defect in the septum between the heart’s two upper chambers (atria). Everyone is born with an opening between the upper chambers called the foramen ovale; in ASD, this opening is larger than normal and doesn’t close after birth. Many babies don’t show signs or symptoms; in adults, signs usually appear by age 30, though sometimes much later.

A 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.

A welcoming, supportive community intended for family members taking care of loved ones. An extension of Ben’s Friends rare disease communities and their private Facebook group.

Structural 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.

A group of congenital heart defects including Atrial Septal Defect, Aortic and Vessel Defects, Valve defects, Single Ventricle Defects, Tetralogy of Fallot, and Transposition of the Great Arteries. Originally built to serve ASD patients and expanded to include other congenital defects.

An umbrella term for several medical conditions that cause a malfunction of the Autonomic Nervous System — which controls heart rate, blood pressure, digestion, kidney function, and temperature regulation. People with dysautonomia may experience lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

A rare condition where an elongated temporal styloid process (more than 30mm) is in conflict with adjacent anatomical structures, causing pain and other symptoms.

Individuals with EDS have a genetic defect in their connective tissue, which provides support to skin, muscles, and ligaments. Fragile skin and unstable joints result from faulty or reduced amounts of collagen — the protein that acts as a “glue” adding strength and elasticity to connective tissue.

A 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.

Chronic 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.

A 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.

A chronic inflammatory disease that occurs when the body’s immune system attacks its own tissues and organs. Inflammation can affect joints, skin, kidneys, blood cells, brain, heart, and lungs. The most distinctive sign is a butterfly-shaped facial rash across both cheeks, though it doesn’t occur in all cases.

An infectious disease caused by bacteria of the genus Borrelia. Approximately 10–20% of patients treated with antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches — sometimes lasting more than 6 months, known as Post-treatment Lyme Disease Syndrome (PTLDS).

A disorder caused by a genetic mutation resulting in an excessive number of mast cells in the body. When triggered, excess mast cells can overwhelm the body, causing facial flushing, itching, rapid heartbeat, abdominal cramps, lightheadedness, or loss of consciousness. Common triggers include alcohol, temperature changes, spicy foods, and certain medications.

A cancer of the plasma cells, which are responsible for producing antibodies. Abnormal plasma cells accumulate in the bone marrow and interfere with the production of normal blood cells. Most cases also feature production of a paraprotein, an abnormal antibody that can cause kidney problems, bone lesions, and high calcium levels.

An inflammation of the muscles, caused by injury, infection, medications, or even exercise. Some forms are chronic and idiopathic (cause unknown). Types include dermatomyositis (DM), polymyositis (PM), juvenile myositis (JM), and inclusion-body myositis (IBM).

A chronic sleep disorder characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy generally experience REM sleep within 5 minutes of falling asleep (versus the typical hour or more), and often experience disturbed nocturnal sleep, which is frequently confused with insomnia.

A kidney disorder causing the body to excrete too much protein in the urine, usually caused by damage to the small blood vessels in the kidneys. Symptoms include swelling (edema), particularly in the feet and ankles, and increased risk of other health problems.

One of several types of muscular dystrophy — a group of genetic, degenerative diseases primarily affecting voluntary muscles. Named for the muscles first affected (eyelids and throat), OPMD also affects facial and limb muscles. Symptoms usually appear between ages 40 and 60. Although progressive, its progression is usually fairly slow; there is no cure but several therapies and corrective devices can help.

Damage 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.

A 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.

A 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.

Also called Raynaud’s phenomenon, this cardiovascular condition causes blood vessels to contract and restrict blood flow, usually in the hands, feet, or both. Raynaud’s disease occurs in up to one-third of individuals with lupus.

An autoimmune disease where the body produces extra antibodies directed against its own tissues, leading to inflammation. The hallmark symptom is generalized dryness — typically dry mouth (xerostomia) and dry eyes — and may also affect the skin, nose, kidneys, blood vessels, lungs, liver, pancreas, peripheral nervous system, or brain.

There are around 88 recognized sleep disorders, but the most common include insomnia, sleep apnea, narcolepsy, restless legs syndrome, and periodic limb movements. About one-third of the population has some form of insomnia at any given time. Ben’s Friends also sponsors a dedicated narcolepsy community at LivingwithNarcolepsy.org.

A rare form of cancer that occurs primarily in the extremities of the arms or legs, often in close proximity to joint capsules and tendon sheaths. As one of the soft tissue sarcomas, it is among the rarest forms of soft tissue cancer.

A form of acquired brain injury that occurs when a sudden trauma causes damage to the brain — when the head suddenly and violently hits an object, or when an object pierces the skull and enters brain tissue.

A common hereditary coagulation abnormality caused by a qualitative or quantitative deficiency of von Willebrand factor (vWF) — a protein essential for platelet adhesion and proper blood clotting.

A safe and supportive space for mothers to share experiences, seek advice, and access resources to help both themselves and their child thrive. Connect with other warrior moms who understand the unique challenges of caring for a child with a rare disease.