Why Joining Your Rare Disease Community Is Important...When my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
Mastering the Infusion: A Guide to Self-Administration and Port Care...Living with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...reactionscomments
Setting Boundaries: What Self-care Looks Like...While I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
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
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...
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...
Community Views: Navigating the ER as a Rare Disease Warrior...Living with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions7comments
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
