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
Community Health Leaders...In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with rare disease every...
Signs and Symptoms of hATTR-PN...Living with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
How Is Amyloidosis Treated?...Amyloidosis is a rare disease in which an abnormal protein called amyloid builds up in the organs. The heart, kidneys, liver, spleen...
