Navigating Life with a Rare Disease: An Accessibility Story...The most consistently bothersome aspect of living with hemophilia is my left ankle....reactions3comments
Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a...reactions4comments
What Is Power Posing?...symptoms of chronic, rare conditions like hemophilia, sickle cell disease, and more....reactionscomments
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...Having moderate hemophilia doesn't prevent me from doing most of what I want to. I could...reactions1comment
What Is a Rare Disease?...Some have been known for hundreds of years, like cystic fibrosis and hemophilia. Others have only recently been discovered....
Community Views: The Biggest Misconception About My Rare Disease...“It’s just bad allergies!” “Women can’t have hemophilia. We hear it all the time.” “It’s all...reactionscomments
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed...
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."...reactionscomments
Common Tests and Tools for Diagnosing a Rare Disease...The lab checks it for genetic mutations that can cause inherited diseases or defects, such as
Caring for a Child With a Rare Disease: Conventional Versus Specialized Education...We made our decision a week before summer began, choosing a school I believe will change my...reactions3comments
How Do I Find a Specialist for My Rare Disease?...You can ask a GARD Information Specialist online to help you find a specialist....reactionscomments
Becoming a Do-Not-Resuscitate Patient...Disclaimer: A DNR bracelet is not legally binding in my state; only a DNR order is....reactionscomments
Facing a Terminal Illness...This type of care also offers support to your loved ones. Your doctor can give you a referral...reactionscomments
Shining a Light on Rare Diseases...As a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty...reactionscomments
Tips for Finding the Right Doctor...She simply got a new position at a different practice....reactions2comments
Yoga Doesn't Cure My Autoimmune Diseases...But it's not a stand-alone replacement for medical treatment, and it's certainly not a cure....reactions12comments
Planning a Vacation With a Rare Disease...We'd be going to a small town in a different country....reactions2comments
Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those...reactionscomments
Living with a Syndrome Without a Name (SWAN)...A child with a SWAN may one day receive a precise diagnosis. But many continue to...reactionscomments
