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...Still, a primary care doctor may play a role in your care....

...If you have a family history of a genetic condition like XLH, you may want to get tested to see if you...

...I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly....

...goes wrong, how to file a claim or submit a complaint....

...I often hear a casual, “You still eat gluten-free?” (Yes, I have a medical condition that requires a gluten-free diet for life.)...

...After such a long time without answers, you may think a diagnosis will bring relief. For many, it does....

...They will need dialysis for the rest of their life unless they are a good candidate for a kidney transplant....

...Perhaps it was with a technician completing a medical test for you and in the small chit-chat that often takes place when they ask...

...As a person living with a rare and chronic disease, I have much less energy than the average person....

...As a child, I moved around a lot. I experienced abuse and abandonment....

...These cancers make up about a quarter of all cancers and account for about a quarter of all cancer deaths....

...That's because I was there and able to do as much as my colleagues, while a year prior, I

...advice of a qualified attorney....

...Gene editing is a way for scientists to change a cell's DNA. Scientists use advanced tools to cut DNA at specific...

...While being a caregiver for a loved one may be necessary and can be rewarding, burnout is common....

...Making a MAC lung disease diagnosis often requires the help of a specialist....

...You can store them digitally, in a file folder, or inside a three-ring binder....

...Sharing your story can make a difference, and we believe each story can change how others understand life with a rare disease....

...This may involve a physical exam, a chest scan, and a mucus analysis....

...As a person with a rare disease living on disability funds, just trying to make ends meet can feel nearly impossible....