Treating Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow...reactionscomments
Complications of Primary Biliary Cholangitis: What to KnowPrimary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver...reactionscomments
Community Views: The Hardest Symptoms to ManageThere are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease...reactionscomments
Don't Put Things Off With Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
Community Views: What Makes Us UniqueLiving with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But...reactionscomments
Finding Resilience and Purpose After a Rare Disease DiagnosisMy life changed dramatically in my early twenties when I experienced the onset of a rare disease called narcolepsy. Everything shifted, seemingly...reactionscomments
Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Accessing treatment can be hard for many. Many rare disease drugs are expensive. Some are...reactionscomments
NOW CLOSED: Finding Comfort in Rare: Awareness Month GiveawayThe Finding Comfort In Rare Giveaway is now closed. Thank you for your interest! February is Rare Disease Awareness Month, a crucial...reactions1comment
The Power of Your Voice: Sharing All Symptoms with All SpecialistsTime and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...reactions2comments
The Diagnostic Maze: Why Was I Misdiagnosed?Finding the cause of your rare disease can feel like a long journey. Many people with hereditary angioedema (HAE) spend years looking...reactionscomments
HAE and the Estrogen Connection: A Guide to Hormonal TriggersHereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...reactionscomments
Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there...reactionscomments
Rare Disease Advocacy Is a Constant, Never-ending OpportunityRecently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare DiseaseI am beginning this article on my commute train to work, starting another work week after a typical weekend for me of...reactions4comments
Questions to Ask Your Doctor When You Have Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you...reactionscomments
Understanding Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also...reactionscomments
Living With Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can...reactions5comments
How is hATTR-PN Diagnosed?Many people who have hereditary transthyretin amyloid polyneuropathy (hATTR-PN) go through a long and difficult journey before they get a correct diagnosis...reactionscomments
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)Learning that you or a loved one has a rare condition can feel overwhelming. Many people with transthyretin amyloid polyneuropathy (ATTR-PN) spend...reactionscomments
Signs and Symptoms of hATTR-PNLiving with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
