Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been diagnosed. That’s the warning from Christopher P. Austin, MD, director of the National Center for Advancing Translational Studies(NCATS) at the…

It is hard to admit that my chronic lung disease is having more than a physical impact on me. Idiopathic pulmonary fibrosis (IPF) is a relentless, cruel disease and sometimes it causes me to behave in ways that leave me feeling ashamed. This disease sets me apart from most of…

I named my column “Courage to Care” because I wanted to convey that it takes a lot of guts to be a caregiver. The moment I decided to take responsibility for protecting my mother, I became a courage-making machine. I have mustered courage all day, every day, to face…

I vividly remember being told I had something called idiopathic pulmonary fibrosis (IPF). That day and conversation will be forever etched in my mind. I looked at the specialist revealing the news and said to him, “OK. What’s that?” Like most people, I’d never heard of this disease before…

Another Mother’s Day is upon us. As each year comes round, it seems that I think about my mother more and more. My mom passed away on June 27, 2007. She suffered a fractured pelvis from which she didn’t fully recover. Afterward, she lived with ongoing pain and contracted frequent…

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