When It’s Not Laziness: Navigating Procrastination and Rare Disease...Don't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
The Power of Multidisciplinary Rare Disease Care...I 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 Advocacy...By 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 Group...Advocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions1comment
Community Team...Welcome to Health Union's Community Team. Our Community Team is made up of a diverse group of employees of Health Union who...
How I Learned to Advocate for My Rare Disease Care...I 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 Disease...I 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 Cholangitis...Primary 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 Know...Primary 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 Manage...There are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease...reactionscomments
Effective Ways to Manage Brain Fog and Fatigue..."I just read that last chapter. Why can’t I remember what happened?" "I’ve never missed a deadline and just forgot a major...
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
