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
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
Signs and Symptoms of Rare Kidney DiseasesRare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
How Persistence and Medical Partnership Impact DiagnosisI am a complicated rare disease patient. Not only do I have two rare diseases, but I am also potentially developing a...reactions4comments
Tips for Reducing Medical Appointment BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
