A Journey in Rare Disease - World Orphan Drug Congress 2016

This week, I welcome yet another guest blogger to the Vencore Health Analytics site. Katelyn Ciccozzi – physicist, data scientist and marketing apprentice – tells us about her experience at her first business trip to her first conference in her first job. In reading Katelyn’s post, I was reminded that I love what I do because we are helping to connect rare disease patients to therapy. It is easy to maintain enthusiasm for that goal; now if I could just feel that way about the presidential campaign… :-)

Tara Grabowsky, MD
Chief Medical Officer, Vencore

Last week, six members of our group journeyed to Washington, D.C. for the 2016 World Orphan Drug Congress (WODC). This was my first time attending this conference and only my second time out representing Vencore. I was a little (okay maybe a lot) nervous, but I was more excited to venture on my first business trip. Even though I was preparing for the conference months in advance, I was not sure what to expect.

We conducted a survey of WODC participants to understand how/if they are using big data analytics. The attendees ranged from small to large pharma, CROs, patient advocacy groups, and patients. Surprisingly, half of those who responded to our survey said they were not using big data analytics in their work. Given that, I am sure you can imagine that people were universally amazed at the information we can find on diagnosed patients, let alone being able to find undiagnosed patients!

I was so grateful that the WODC attendees were such a welcoming crowd! I had thought they might disregard such novel approach to healthcare analytics.

But what I learned is this: every company I met at WODC, big or small, holds the patient at the center. They all – WE all – want to improve the patient’s journey. We were trying to find ways to collaborate to better patients’ lives.

As we talked about patients’ journeys I went through my own journey. After months of managing details and logistics for the six of us to attend WODC, host a round-table, conduct a survey, build a demo, organize marcom, and host a booth, I was thrilled to see that at the end of the day it all comes down to one thing:


Katelyn Ciccozzi
Data Scientist, Vencore