The Future of HAE Care: Understanding Gene Editing...Hereditary angioedema is a rare genetic condition. It is often called HAE. People with HAE experience severe swelling in different parts of...reactionscomments
Beyond the Needle: Overcoming HAE “Infusion Fatigue”...Hereditary angioedema (HAE) is a rare genetic condition. It causes sudden and painful swelling in the body. For many people, life-saving infusions...reactionscomments
Understanding Hereditary Angioedema (HAE)...People with hereditary angioedema (HAE) may spend years searching for answers. The road to an accurate diagnosis can be long and difficult...reactionscomments
I’ve Learned Self-care. What About Self-love?...When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves...reactionscomments
Common Tests and Tools for Diagnosing a Rare Disease...An incorrect or delayed diagnosis of a rare disease is common. Because so few people have a particular rare condition, the doctors...
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...reactions3comments
5 Rare Life Challenges: A Caregiver Perspective...As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...reactionscomments
How I Stay Informed on Ehlers-Danlos Syndrome Advocacy...Ever since I was diagnosed with the first of my three rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
How Do I Find a Specialist for My Rare Disease?...When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...reactionscomments
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 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...
