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Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

The Chordoma Foundation is amazing.

They have been the sole voice in the world for advancing research, supporting patients and their families in this extremely rare cancer. If not for them, those of us living with chordoma would have no hope of a cure.

When I was diagnosed in 2012 there were almost no clinical trials and no reasonable expectation that a cure would ever be possible. Now, eight years later, there are multiple clinical trials, and the driver of chordoma has been identified, and it is now a question of when, not if, a cure can be found. This is all due to the drive and support of the Chordoma Foundation. They have advanced the cause far beyond what could ever be expected of a small not for profit by encouraging collaboration, open research, and bringing together and supporting the top researchers, scientists and physicians in the world.

At the same time, they have built mouse models, a bio bank and various other much needed tools for researchers, which just didn't exist before.

Finally, their support of the chordoma community is outstanding. Anyone and everyone who contacts them is provided with support - from registries of physicians in multiple countries who specialize in chordoma, to basic or advanced info, to up to date leading edge information, to patient navigators, they have thought it through and help the patient and their caregivers along the journey.

They are an outstanding not for profit and deserve the highest praise and commendation.

Role:  Board Member