How Are Neuroendocrine Tumors Treated?...Neuroendocrine cells are specialized cells with traits similar to both nerve cells (neuro) and hormone-releasing cells (endocrine). Neuroendocrine cells are found throughout...
How Is Idiopathic Pulmonary Fibrosis Treated?...Idiopathic pulmonary fibrosis (IPF) is a serious lung disease. It occurs when the tissue around air sacs (alveoli) in the lungs gets...
You're Just Complicated...Have you ever been told that you are complicated by a medical professional? I have time and time again. My journey started...reactions2comments
How to Promote Legislative Advocacy for Rare Diseases...Can you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack...reactionscomments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...As an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind...reactionscomments
When Stubbornness Pays Off...I knew from childhood that there was something different in my health from other kids. It seems as if I was born...reactions3comments
It's Just the Way You Are...I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with...reactionscomments
Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a...reactions4comments
Groin Wiser: Adopting New Strategies to Manage My Rare Disease...I recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first...reactionscomments
Was I Just Soft? A Reflection on Getting a Diagnosis...Getting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself. hEDS is...reactionscomments
Fill Your Cup Giveaway...The Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all...reactionscomments
How to Observe Rare Disease Awareness Day...I admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my...reactionscomments
The Overflowing Cup: Childhood Trauma and Mental Health...Recently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
Recovering From Advocacy Burnout...Advocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
Working Remotely as a Caregiver...Work is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...A special trip to New York City was a little over 24 hours away. I was going to honor one of my...reactionscomments
Community Spotlight: Rare Cancers...Rare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all...reactionscomments
5 Changes I Would Like to See in the U.S. Healthcare System...As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things...reactions4comments
Community Views: The Most Annoying Unsolicited Advice...If you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with...reactions1comment
