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AXIOS interview with RARE-X founder, Nicole Boice

Recently, Axios health care editor Tina Reed interviewed RARE-X founder and chief engagement officer Nicole Boice for an online event called A conversation on breakthroughs in rare disease diagnosis.

In the interview, Nicole illustrated the vastness of the rare disease community, how the health care system can best support patients with rare diseases, and how data collection is streamlining patient diagnostic journeys.

  • On the biggest challenges for rare diseases: “It’s three really big challenges that face rare disease: data silos, the lack of structured and appropriate data for research, as well as no data.”
  • On collecting rare disease data for patients to access: “We’ve got to figure out a way to streamline and automate some of the data that we know patients continue to get asked for…a lot of what we’re doing is creating that automation, ease of use, deburdening patients, increasing engagement and data sharing and the ability for us to create a more efficient approach to tackling some of these big massive challenges in rare disease.”

To watch the interview click the link below and forward to 20:00.  The online broadcast was sponsored by Takeda Pharmaceuticals.  Enjoy!

Watch: A conversation on breakthroughs in rare disease diagnosis


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