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CFTies is a private CF community for Patients, Family Members and our Trusted Supporters. To register, your status must be validated by a CF Clinic or existing CFTies Member.

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Frequently Asked Questions

How is my personal information used?

When you register on the site, personal data including name, photo, email address, city of residence, clinic information, personal account preferences are collected. This data is collected to validate that you are actually a CF patient, family member or in a CF support role of some form, which is mandatory to gain access to the site, and in the absence of which you will not be granted access to the site.

After registration, can some of my personal information be hidden?

Yes, once your ID and CF Status have been confirmed, we will do our best to respect all individual privacy requests. After all, it’s your information, you ultimately decide how it’s used. Just email us (below).

How is the additional personal information used?

After you’ve been accepted into the CFTies.org community, you will be able to Edit Your Profile, where can enter additional personal information such as education, current activity, some detail of your CF history, and so forth.  None of this information is mandatory, though some information is recommended by way of introduction to other community members. You should only enter additional personal information that you are comfortable in sharing.

What about entering my Social Accounts?

Entering this information should not be an issue for you, because it’s likely already public information.

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