What It’s Like Being a Family Caregiver
...readings out of nowhere which can affect completing dialysis that can lead to missing some time off for work, etc. When it comes to medical appointments, our goal is schedule...
Local volunteer leaders give an inside look at the New York City Chapter
...ease my mind, I have learned to deal with it as it comes. I’m comforted by educating myself on the latest research, speaking with others in the community about their...
Teen blogger plans to raise PKD awareness through modeling career
...awareness after going to the PKD in Children Conference in Chicago this May. The best advice I could give others looking for opportunities to raise awareness about PKD is to...
Advocate raises her voice on Rare Disease Day
...she had ARPKD, but she’s been raising her voice to educate others ever since: “There are some things that we all have memorized—your best friend’s phone number, your mom’s...
Knowledge
...comforting to know that we are not alone and not the only ones enduring lower back pain, high blood pressure, cyst bleeds and so on. This knowledge has had a...
