Articles, Events, & Opportunities

Prior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical stories, such as the notorious Tuskegee experiment, had...

Primary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you may feel a lot of uncertainty. Your healthcare...

Advocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated comments. Sometimes, a deep fatigue sets in, and...

My rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress disorder (PTSD). I changed from an outgoing, carefree...

Living with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature of our condition. Other complications are social or...

Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver. Over time, this can cause serious liver damage, called cirrhosis. Living with...

Living with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But it is far from everything you are. To...

Primary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow the disease. This may prevent complications or serious...

Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am reminded by my own therapists that when we...

The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys no one understands unless they live...

Living with a rare disease can come with a variety of comorbidities. It is difficult to know what to expect in terms of comorbidities for a person with a rare...

I have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease, and one is statistically under-diagnosed. Can you guess...

My motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that often surprises me and allows me to find...

RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and share you own, and much more! Our goal...

Primary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver, it can cause complications throughout the body. Many...

Being a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the person affected, but it also impacts the lives...

As a person living with a rare disease, it can be difficult to find other people who also suffer from the same condition. Not knowing people who can relate to...

As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for...

I recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning of the year. Unfortunately, because of circumstances with...

"Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with a chronic illness is a challenge. My spirit...