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...
Medicaid Needs to Do Better for Rare Patients and Families...I recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning...reactionscomments
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and...reactionscomments
The Impact a Rare Cancer Has Had On My Life...Being diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you...reactions2comments
How Is Fabry Disease Treated?...Fabry disease is a rare, inherited condition caused by a mutation in the GLA gene. This gene is found on the X...
How Is Amyotrophic Lateral Sclerosis Treated?...Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system that gets worse over time. It is also known as Lou...
What Is an Orphan Drug?...Rare diseases are sometimes called "orphan diseases" because they are neglected by the medical community or affect very few people. "Orphan drugs"...
