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If you contact me via email...
I do not share your email address with anyone without your permission.
If I am unable to answer a question, I will forward your question on to a physician knowledgeable about HNPP.
If I need to contact a physician, your question will be either rephrased by me or I will cut and paste your email message onto a new email. Your name and email address are not included. This is the only time your email question is shared with a third party.
Your email is saved , by me, for future reference. This would include any information you send me (email address, other contact information, name, medical information, etc.) I save emails for several reasons: in case I need to contact you again; to review what I have previously written in ongoing emails back and forth; and to use as a reference when I am updating the website (what questions need to be answered or answered better?, questions to the doctors, etc.).
No one accesses hnpp emails other than myself. Technically, both my husband and son do have access to my emails. The former shares the computer with me and the latter is my 'help desk'. But both, simply do not read my email.