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...
Don't Put Things Off With 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
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...
