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Li -Fraumeni Syndrome - has anyone been diagnosed with this?

Anniegolightly
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Wondering if anyone on this platform has been diagnosed with the rare mutation of the TP 53 gene resulting in Li-Fraumeni Syndrome?

If so has it affected your life and how?  Are you part of any studies  If so where?

Thanks Annie 

Parents
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    Sorry, only just seen this.  I have Li Fraumeni Syndrome.  We receive a full body MRI and a brain MRI every year as standard NHS monitoring.  I’m also a part of a study.  

    The George Pantziarka TP53 Trust are a great resource for information and support.  I’d also be happy to chat with you as an LFS patient.

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    Sorry, only just seen this.  I have Li Fraumeni Syndrome.  We receive a full body MRI and a brain MRI every year as standard NHS monitoring.  I’m also a part of a study.  

    The George Pantziarka TP53 Trust are a great resource for information and support.  I’d also be happy to chat with you as an LFS patient.

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