About Us

A rare disease, by definition, affects fewer than 200,000 individuals in the United States. But combined, up to 30 million Americans have a rare disease, and most conditions are poorly understood. That combined burden is why one of PCORI’s six multi-stakeholder advisory groups is the Advisory Panel on Rare Disease.

We sat down with advisory panelists Scott Berns, MD, MPH, and Matt Cheung, PhD, RPh (see box, below), to discuss the importance of rare disease research and PCORI’s role in it.

Berns, together with his wife Leslie Gordon, MD, PhD, were the Opening Keynote speakers at the 2019 PCORI Annual Meeting.

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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