When I was thirteen years old, I somehow convinced my parents to let me and my best friend travel on our own from Toronto, Canada to Trinidad and Tobago in the Caribbean to meet another friend and her family who were living there. Looking back, I have no idea how I managed to pull off that feat of parental persuasion! The two of us boarded the plane, thrilled to be traveling alone to an exotic place. Our flight had a brief stop-over in Barbados before our final destination. At that stop, the plane malfunctioned. At two o’clock in the morning, we were told we couldn't complete the last leg of the journey until the following day.
This was the early nineties when there wasn’t an easy way to connect with people back home for help. Here we were, thirteen, on our own with this totally unexpected problem in a completely unfamiliar place.
We were told that we’d be taken to a hotel to stay for the night and put into a minivan that drove in pitch black for what felt like an eternity (though it was likely about 20 minutes). We were completely overwhelmed by this turn of events.
When we arrived at the hotel in the darkness of night, we couldn’t see anything around to tell us where we were. Was it safe? How would we get to our flight the next day? We were so anxious that once we got to our room we decided to sleep in shifts (of course, we both fell sleep right away). When we woke up in the morning, we discovered that, unbeknownst to us, we had been put up in a superb, five-star resort with a private beach.
In the light of day our room had this amazing view over the clearest water I’ve ever seen. From our balcony, you could literally see the ocean floor.
We realized that what had seemed really frightening the night before was actually paradise. We spent the morning at the beach until our flight later that afternoon.
That was a formative experience—realizing that, when something goes wrong, sometimes a different perspective can change everything. It reassured me that whatever comes your way, if you think you can’t handle it, you're probably wrong. A fresh perspective and a little bit of time to adjust can make a world of difference.
That trip sparked my love of traveling and experiencing new places and it became a lifelong passion.
At University, it was important to me to spend time studying abroad. I ended up spending a year in Paris and two years in England. I then returned to Canada, and a few years later my career took me back to Europe for another decade. During those years I also travelled to more than 40 countries around the world, including Panama, India, Singapore, Malaysia, Spain, Morocco, and many other amazing places. Those experiences taught me to be comfortable going outside my comfort zone. You gain a confidence from understanding that you can navigate something that you're not necessarily certain about.
That same philosophy has guided my career. I've never been afraid of taking on something that doesn't have a set out roadmap. In fact, I usually seek that out.
There's a symmetry there—I like travel for the same reasons I like the roles that I have taken on in my career path. That journey began 15 years ago in my early 20s with my first strategic marketing role in a Canadian pharmaceutical company. From there, I chose to follow a career path that might be considered ‘unconventional’. It has taken me through every phase of the product lifecycle and every clinical care setting. It has included strategic roles in the biotech, pharmaceutical, and patient advocacy sectors in Europe and North America. Strategic collaboration with patient communities in the development of treatments and health services to support them has been a key constant in the roles that I chose. The other constant was to challenge myself to do something different with every step forward.
In developing treatments for Rare Diseases, often there is no convenient, ready-to-use roadmap that everyone can follow. The clinical literature is limited, the “right” endpoints are to be determined, and the day-to-day life experience of the people who are affected is vastly uncharted territory. This presents enormous challenges that rare disease clinical programs must overcome to succeed. It’s necessary to try new approaches, to do things that haven’t been done before, and to do them well. It pushes the boundaries of every stakeholder’s comfort zone—investigators, sponsors, patient organizations, regulators.
The sense of urgency for rare disease studies to succeed is immense. When a study fails to thrive and meet recruitment and retention milestones, it’s a devastating loss for the patient community and for a sponsor.
Creating that path to success for a rare disease clinical trial takes close collaboration between sponsors, patient communities, regulators, and sites. That’s where my role, as Manager of Patient Advocacy & Engagement, in PRA’s Center for Rare Diseases comes in. I work with both sponsors and patient advocacy organizations to help find that path to success, from protocol development to study implementation.
It’s an exciting role to say the least, one that didn’t exist in the CRO industry until very recently. PRA’s Center for Rare Diseases has been a true pioneer in that sense, re-engineering how the Center supports and engages with both sponsors and patient organizations to enable that vital collaboration.
No two days are ever the same for me. Each challenge is unique, and each day I’m able to apply a broad cross section of my diverse experience and expertise to help rare disease studies succeed. Being part of the extraordinary multidisciplinary team within the Center for Rare Diseases means constantly being able to exchange with colleagues who bring a wide variety of perspectives to tackling a challenge. It’s a role that is as energizing as it is challenging.
It’s also a true privilege to work with exceptional individuals with incredible passion for bringing new treatments to people affected by rare disease—whether they are on the sponsor’s team or serving patient communities through an advocacy organization or within PRA. We’re all a team, facing the risks and uncertainties together, and determined to find that path to success for each rare disease study.
Marty Lee, Vice President of Medical Affairs
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