The Power of Multidisciplinary Rare Disease CareI used to hate any doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from...reactionscomments
The Ethical Necessity of Truthfulness in Health AdvocacyBy upholding truthfulness and integrity, health advocates do more than just inform; we empower people to make decisions that significantly impact their...reactionscomments
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions1comment
How I Learned to Advocate for My Rare Disease CareI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic...reactionscomments
More Than Just a Diagnosis: The Daily Impact of Rare DiseaseI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...reactions3comments
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
