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...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 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
Medicaid Needs to Do Better for Rare Patients and FamiliesI 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 GoalsMy arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and...reactionscomments
How to Promote Legislative Advocacy for Rare DiseasesCan 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-careAs an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease CaregiverMy 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 HemophiliaAs 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 DiseaseI 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 DiagnosisGetting 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 GiveawayThe 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 DayI 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 HealthRecently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
