Community Views: What Makes Us Unique...Living with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But...reactionscomments
End of an Era: Living with Oligodendroglioma...I was born on a Tuesday deep in the heart of South Carolina. Over the next eighteen years, I found myself in...reactions1comment
Finding Resilience and Purpose After a Rare Disease Diagnosis...My 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 Treatment...Living 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 Giveaway...The 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 Specialists...Time 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
Role of Genetics in Rare Diseases...Roughly 7,000 rare diseases have been identified so far. Of those, 8 out of 10 have a genetic cause. Understanding the root...
HAE and the Estrogen Connection: A Guide to Hormonal Triggers...Hereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...reactionscomments
How Is Hereditary Angioedema Treated?...Hereditary angioedema (HAE) is a rare disorder in which a person has recurring, severe swelling. This swelling takes place in the arms...
Finding Your Way After Your Child Is Diagnosed With a Rare Disease...I 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 Opportunity...Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
Why Putting Your Health First Is Crucial...Putting your health first can feel difficult when you’re living with a rare disease. There are many tasks to manage, and most...reactions1comment
Rare, Relentless, Rising...A rare disease threads itself quietly through a life long before anyone gives it a name. Mine began that way in May...reactions1comment
From Silence to Service: Practicing Rare Disease Advocacy...I didn’t set out to become an advocate. I set out to just survive. Living with a rare disease means learning to...reactions1comment
Partnership In Health, The Turn Around...I was on life support three times. This was the worst flare I have experienced since my diagnosis five years ago; it...reactions1comment
Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare Disease...I 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 Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you...reactionscomments
