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Fen Y.

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1 reviews

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

My 34 year old husband was diagnosed with a clival Chordoma one month ago. I have to admit that even though we are both doctors, neither of us had ever heard of the word Chordoma before. We quickly realised that our local medical team had very little experience with Chordoma given how rare it is. We felt quite alone going into this scary journey. That was until we reached out to the Chordoma Foundation. Through CF, we were able to access good quality, up-to-date research and within hours we received an incredibly helpful reply from a CF patient navigator. We managed to email expert neurosurgeons overseas and they kindly reviewed my husband’s scans and gave us a plan. With that knowledge, we were able to seek second, third, fourth opinions until we found a surgeon who we are confident in New Zealand to operate on him. Through CF we were also able to join an online community where we received an overwhelming amount of support and help. We cannot thank the CF enough. They are truly life savers.

Role:  General Member of the Public