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Biden Cancer Initiative and ISPNO

“The last couple of weeks have been a whirlwind of activity, but that only goes to prove how in demand our efforts are becoming. We have gone from a time when people thought sharing data was crazy, to the current day where those same people are asking for our help to share data. It’s very gratifying, and you have played a major role in helping us get this far. Without the early help of our visionary supporters, we wouldn’t be nearly this far along! We were part of an elite group of foundations who were invited to Washington, D.C. to participate in a meeting hosted by the Biden Cancer Initiative on June 27th. Dr. Jill Biden led off the morning with a very personal greeting, and we spent the day learning about existing programs and how we can augment those for the greater good. You can probably imagine how excited I was when someone in the room brought up Cavatica - and for once, it wasn’t me!! I made several connections with some rare cancer foundations who need a place to put their data, and I was particularly excited to meet Jessica Morris, a GBM survivor who started the Our Brain Bank app. Jessica has done some amazing work giving patients an easy way to share their day-to-day data, and I think that will be something we see incorporated into patient care very soon. Click here to read more!

Dragon Master Foundation works closely with the National Cancer Institute and a network of over 17 hospitals who have agreed to share data to speed cancer research. We have helped develop a large scale database that houses genomic, clinical and environmental data on pediatric brain tumors, and that can be used as a model for research into other types of cancer and rare disease. We support open data projects that share data with the world - not just a select group of hospitals - and that share that data as quickly as possible so we can impact patients of today.

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