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.…
Author: Rose Andrade
LifewithCrohnsColitis.org: Some Things to Understand about Crohn’s Disease
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…
LivingwithFibromyalgia.org: What is Fibromyalgia and How Does it Affect a Person’s Work?
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,…
LivingwithAddisons.org: 4 Things to know to help a friend living with Addison’s Disease
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…
LivingwithNarcolepsy.org: Narcolepsy Is Beyond Sleepiness. How Does it Affect a Patient’s Life?
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…
Foot and Float to Build 10 New Communities
Ten Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop - us not on Land or…
2018 Ben’s Friends Community Network Update
The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben's Friends Patient communities and may be of interest…
Ben Munoz Joins Antidote Rare Disease Conversation
Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, "How are Rare Diseases Treated?:…
Ben’s Friends Newsletter November 2016
MESSAGE FROM BEN Hi, everyone, I hope this message finds you and your loved ones well. Ben’s Friends Patient Communities was founded in 2007; I had just…
BioBlast Matches Up To $5,000 In Donations To Help Build A New Home For Ben’s Friends
BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities…