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Patient Communities for People with Rare Diseases

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Category: Feature Community

LivingwithPSC.org: Helpful Information About Primary Sclerosing Cholangitis

June 8, 2025Rose Andrade

Primary Sclerosing Cholangitis (PSC) is a rare and chronic disease that is characterized by inflammation and scarring within the bile ducts, causing them to narrow and, eventually, become completely obstructed.…

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LifewithCrohnsColitis.org: Some Things to Understand about Crohn’s Disease

June 28, 2023Rose Andrade

You just found out that your friend has Crohn’s disease, an autoimmune illness that causes inflammation in the digestive tract.  They now know the reason behind the abdominal pain, mouth…

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LivingwithFibromyalgia.org: What is Fibromyalgia and How Does it Affect a Person’s Work?

June 28, 2023Rose Andrade

Fibromyalgia is a chronic illness that involves widespread pain or pain that can be felt all over the body. It also causes fatigue, headaches, sleep and digestive problems, brain fog,…

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LivingwithAddisons.org: 4 Things to know to help a friend living with Addison’s Disease

June 28, 2023Rose Andrade

Addison’s Disease is a rare autoimmune condition which attacks the adrenal glands and causes insufficient production of aldosterone and the stress hormone cortisol.  This then results in problems regulating salt…

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LivingwithNarcolepsy.org: Narcolepsy Is Beyond Sleepiness. How Does it Affect a Patient’s Life?

June 28, 2023Rose Andrade

Narcolepsy, often thought to be a sleep disorder, is in fact a pervasive neurologic disorder with a genetic origin that causes an autoimmune response affecting every body system and facet…

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Acute Disseminated Encephalomyelitis (ADEM)
Addison's Disease
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Atrial Septal Defect
Brain Aneurysms
Caregiver Support Community
Charcot Marie Tooth (CMT)
Chiari Malformation
Congenital Heart Defects
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Central Pain Syndrome
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Dysautonomia
Eagle Syndrome
Ehlers-Danlos Syndrome
Epidermolysis Bullosa (EB)
Erythromelalgia
Fabry
Fibromyalgia
Chronic Facial Pain
Glossopharyngeal Neuralgia (GPN)
Graves' Disease
Guillain-Barre Syndrome (GBS)
Lupus
Lyme Disease
Mast Cell Disorder
Multiple Myeloma
Myasthenia Gravis
Myositis
Narcolepsy
Oculopharyngeal Muscular Dystrophy (OPMD)
Polyneuropathy
Psoriatic Arthritis (PsA)
Primary Sclerosing Cholangitis (PSC)
Raynaud's Disease (RD)
Sarcoidosis
Sjogren's Syndrome
Sleep Disorders
Synovial Sarcoma
Traumatic Brain Injury (TBI)
Ulcerative Colitis (FB)
Von Willebrand's Disease (VWD)

Don't see your condition? Please visit this link.
Contact us @ info@bensfriends.org

Are you in crisis? Please call 1-800-273-TALK

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