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...Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty for days or weeks at a time with...

...Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck to be selected to go and work with...

...As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...

...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...

...Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are...

...When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves with self-care but also self-love. We can easily...

...It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as...

...In 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a...

...At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation...

...Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48...

...I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of rest and activities. Like many people with rare...

...I am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...

...Editor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles at Sickle-Cell.net. Through my work in advocacy, an...

...Living with a rare disease is difficult. Getting access to treatment for rare diseases can make treatment inaccessible for many. Many rare disease medications are expensive and subject to price...

...As someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the symptoms and burdens that this challenge brings to...