How Clinical Trials Are Transforming the Future for Rare Disease WarriorsPrior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...reactionscomments
Fighting for Rare Disease Medication CoverageLiving with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature...reactions3comments
The 2024 Social Health Awards ProgramEditorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
How I Gradually Changed My Relationship With Medical PTSDMy rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress...reactionscomments
Getting Emotions Out: Why It Matters and How to Do ItEmotion 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 ChangeThe journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to...reactionscomments
RareDisease.net Giveaway Terms and ConditionsThese 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 JourneyMy motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Treating Rare Kidney DiseasesMany rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
Rare Versus Under-diagnosed DiseasesI 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 CareIn 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 DiseaseDialysis 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 UpAs I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I...reactions5comments
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 StickerEditor'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 WebinarApplying 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 DiseaseYoung 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
'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
