Scott Schliebner likes to live life a little dangerously. He’s an adventurous and natural explorer. A guy who wants to go places he’s never been before—literally and figuratively. After a long day at work, a 30-mile bike ride is often how Scott unwinds. He’s known for taking the harder route, whether on the ski slopes or in the office.
When Scott realized the huge gap in access, care, and research for rare disease patients early in his career, he naturally stepped in to help fill the need. Today, he’s Senior Vice President of PRA Health Sciences’ Center for Rare Diseases—a Center that just a few short years ago didn’t even exist.
Not even a decade ago, most organizations weren’t talking about rare diseases—but that certainly didn’t mean they weren’t there. Behind the scenes, patients and patient advocates were fighting tooth and nail not just for better treatment and care options, but often for an accurate diagnosis. These patients and families desperately needed help, and drug developers weren’t stepping up to the plate.
Scott recognized this disparity, as well as PRA’s unique ability to support these patients better. With no approved drugs or treatments for many rare diseases, clinical trials are typically the only hope for these often-neglected patient communities. But the trials that did exist were few and far between—and rarely were designed with the actual patients’ needs and limitations in mind. The traditional clinical research paradigm clearly wasn’t working for rare disease patients.
That’s when the idea for the Center for Rare Diseases was born. Recognizing that PRA had all the right ingredients to design and conduct patient-centric rare disease trials, just not the right process, Scott knew it was time for an unorthodox tactic. PRA needed to customize their approach to this unique and challenging space to work for the patients they served—not the other way around.
Since then, PRA has made rare disease research a priority. With the help of an amazing and dedicated team, Scott continues to put patients and their families at the center of rare disease research. It hasn’t been an easy road, but it’s one that Scott continues to navigate with grace and courage. He’s proven that pushing boundaries can lead to medical breakthroughs and, ultimately, fuller lives. Below, he shares his top three pieces of advice for those ready to take risks and help change lives for the better.
1. Whatever you are not changing, you are choosing.
“When the existing clinical research paradigm is archaic and doesn’t work for patients, we can either continue upon this path or do the right thing and push for new, better, and different approaches. Bucking the system isn’t easy—or effortless—but when we can make positive changes for others, it’s all worth it.”
2. You’re either getting better, or you’re getting worse.
“I’m inspired by those who continuously compete and look to improve, no matter what field they’re in. Stepping outside one’s comfort zone isn’t easy, but that’s where real growth occurs. A little bit of discomfort, stress, or uncertainty means you’re pushing boundaries—and pushing yourself.”
3. There will always be hurdles, roadblocks, and speed bumps—especially when you’re a pioneer breaking new ground.
“Running into resistance or an obstacle doesn’t mean you stop in pursuit of your goal. It simply means you have to adjust your course, create a new plan, and work around the issues. We don’t stop. We just find a new path or approach.”
Progress is rarely made without some level of risk-taking. Scott reminds all of us at PRA that stepping outside of your comfort zone may improve not only your life, but also the lives of those around you.
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