Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am...reactionscomments
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to...reactionscomments
The Journey of Diagnosing a Rare Disease...The quest for a rare disease diagnosis is often referred to as a "journey" or "odyssey." The reasons it may take years...
RareDisease.net Giveaway Terms and Conditions...These Official Rules apply to any giveaway (or "Promotion") published on RAREDISEASE.NET, a Health Union ("Health Union" or "We") owned and operated...reactionscomments
Life as a Rare Disease Parent: My Motherhood Journey...My motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Alternatives for Managing Chronic Pain...Chronic pain is pain that lasts for longer than 3 months. Some rare diseases can cause significant pain in the body. This...
Rare Versus Under-diagnosed Diseases...I have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease...reactionscomments
Cast Your Votes! What Do You Want to See on RareDisease.net?...RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and...reactionscomments
Big Moves for Better Care...In 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly...reactions3comments
Dialysis and Kidney Disease...Dialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people...reactionscomments
Living Life With Rare Diseases: Giving Up vs Not Giving Up...As I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I...reactions7comments
What Is Adult-Onset Still’s Disease?...Adult-onset Still’s disease (AOSD) is a rare type of autoinflammatory arthritis. An autoinflammatory condition occurs when the body’s immune system, which creates...reactionscomments
Why I Am Scared to Own a Handicap Parking Sticker...Editor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at...reactions14comments
Applying for Disability Webinar...Applying for disability benefits can seem like an overwhelming ordeal. Coping with a rare disease can make the process feel even more...reactionscomments
Transitioning From Pediatric to Adult Care With a Rare Disease...Young people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not...reactionscomments
Thank You for Taking Our Survey!...We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with a...reactionscomments
Jesse Mercury...Jesse Mercury is the host of the Major Pain podcast, where he interviews people living with chronic illness and disability. The goal...
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis...reactionscomments
How Is Hypoparathyroidism Treated?...The parathyroid glands are small glands located in the neck next to the thyroid glands. You have 4 of them and they...
How Is Gaucher Disease Treated?...Gaucher (go-SHAY) disease is a rare, inherited genetic disorder. While Gaucher disease is rare, it is one of the most common of...
