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rockhopjohn

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Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

They quite possibly saved my wife's life. After her diagnosis with Chordoma, her surgeon handed us an info sheet from the Chordoma Foundation and basically told her, "Good Luck." Our next step was ravenously consuming the information compiled by the Chordoma Foundation about the disease, and it's treatment. Because of the Chordoma Foundation, within a few days we were more knowledgeable about Chordoma than any doctor in our community. This was followed by talking with their patient navigators, who helped us find not just Chordoma experts, but Chordoma experts who were specialists in my wife's specific set of circumstances. They also helped my wife to be accepted into a Chordoma Clinic at the National Institutes of Health, which put us in contact with, and allowed her to be evaluated by, the very foremost experts in Chordoma treatment and research.

Beyond the specific help they have given our family and many others, the Chordoma Foundation is organizing the scientific community around the goal of finding treatments and ultimately a cure for Chordoma. These treatments may even hold the key to curing a variety of other cancers with a similar weakness. They organize yearly community conferences to keep the community of patients, family, and caregivers in touch with and involved with the doctors treating and researching Chordoma. They raise funds and provide them for research into treatments. The research they have funded has led to significant advances in the understanding and treatment of Chordoma, and could very well lead to a cure.

Without any hesitation, I can say their work has saved my wife's life, and many others. Their work may eventually lead to a cure for a cancer that otherwise required invasive treatment, and few positive outcomes.

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