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...
HAE and the Estrogen Connection: A Guide to Hormonal Triggers...Hereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...reactionscomments
How Is Hereditary Angioedema Treated?...Hereditary angioedema (HAE) is a rare disorder in which a person has recurring, severe swelling. This swelling takes place in the arms...
Finding Your Way After Your Child Is Diagnosed With a Rare Disease...I 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 Opportunity...Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from...reactionscomments
Why Putting Your Health First Is Crucial...Putting your health first can feel difficult when you’re living with a rare disease. There are many tasks to manage, and most...reactions1comment
Rare, Relentless, Rising...A rare disease threads itself quietly through a life long before anyone gives it a name. Mine began that way in May...reactions1comment
From Silence to Service: Practicing Rare Disease Advocacy...I didn’t set out to become an advocate. I set out to just survive. Living with a rare disease means learning to...reactions1comment
Partnership In Health, The Turn Around...I was on life support three times. This was the worst flare I have experienced since my diagnosis five years ago; it...reactions1comment
Pacing Yourself, Pushing Yourself: How to Manage Energy Levels With a Rare Disease...I 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 Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you...reactionscomments
Understanding Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also...reactionscomments
Living With Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can...reactions5comments
How is hATTR-PN Diagnosed?...Many people who have hereditary transthyretin amyloid polyneuropathy (hATTR-PN) go through a long and difficult journey before they get a correct diagnosis...reactionscomments
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)...Learning that you or a loved one has a rare condition can feel overwhelming. Many people with transthyretin amyloid polyneuropathy (ATTR-PN) spend...reactionscomments
