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Privacy Policy
Any person accessing, browsing, or otherwise using the CFTR2 Web site http://www.cftr2.org ("Site") either manually or via
an automated device or program, to the extent permitted hereunder, shall be considered a "User" under this privacy policy. All Users are bound by the terms
of this privacy policy. The CFTR2 team ("CFTR2"), the Cystic Fibrosis Foundation ("CFF"), and Johns Hopkins Hospital ("Johns Hopkins") are committed to
protecting the privacy of our Users.
This privacy policy discloses the privacy practices governing the use of information submitted to CFTR2, CFF, or Johns Hopkins
through this Site. Capitalized terms shall have the meaning designated in this privacy policy.
The Information We Collect
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Anonymous Browsing Information
You can browse the Site without revealing personal information that can be used to identify you. CFTR2, CFF or Johns Hopkins may
collect non-personal information such as your Internet Protocol ("IP") address, the name of the domain you used to access the Internet, the Web site you came
from and the site you visit next (see "How We Use It," below). However, CFTR2, CFF and Johns Hopkins do not associate any non-personal information with records
containing any personal information submitted to us, so you remain anonymous when you browse the Site.
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Personal Information
CFTR2, CFF, or Johns Hopkins may collect personal information such as names, company names, titles, addresses, telephone numbers,
fax numbers, e-mail addresses, and payment information (such as credit card numbers) from Users. For example, CFF may collect personal information submitted
through online application and event registration and donation forms.
By submitting personal information to this Site, the User acknowledges that he or she has read this privacy policy, understands it,
agrees to its terms and authorizes CFTR2, CFF, and Johns Hopkins to collect, use and disclose personal information pursuant to the terms of this privacy policy.
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Cookies
This Site may use cookies. A cookie is a small file that your Web browser places on your computer's hard drive. It functions as an identification card, recording
your passwords, purchases and preferences. Most browsers are initially set to accept cookies. You can set your browser to notify you when you receive a cookie,
giving you a chance to decide whether or not to accept it.
While CFTR2, CFF, or Johns Hopkins may use cookies to track your visit to the Site and our servers automatically log the IP address
of your computer, this information does not identify you personally and you remain anonymous, even if you have previously submitted personal information to CFTR2,
CFF, or Johns Hopkins through the Site or otherwise.
Third parties whose Web sites are accessible through links on the Site may also use their own cookies when you link to their site or service. CFTR2, CFF, and Johns
Hopkins do not control these third parties' use of cookies and cannot guarantee that they will uphold the same privacy standards as CFTR2, CFF or Johns Hopkins.
CFTR2, CFF, and Johns Hopkins expressly disclaim any and all liability related to the collection, use or disclosure of information by
third parties. You should review the privacy policies of any third party sites that you visit through a link from the CFTR2 Site to understand how they use cookies
and the information they collect through cookies.
How We Use It
Anonymous browsing information, including your IP address, may be used to gather broad demographic information. This information may
be aggregated to measure the number of visits, average time spent, page views and other statistics about Users of the Site. We also may use this data to monitor
Site performance and to make the Site easier and more convenient to use.
CFTR2 uses personal information collected from Users, such as names and e-mail addresses, to respond to User inquiries. CFF uses
personal information collected from Users, such as names and e-mail addresses, to respond to User inquires, to process User applications for grants or participation
in CFF programs, to process User donations, to help organize fund-raising events and to inform Users of new programs and services.
Who We Share It With
Unless we have your consent or except as required by law, CFTR2, CFF, and Johns Hopkins will not share your personal information with
any person or entity other than those affiliated with CFTR2, CFF, or Johns Hopkins, entities acting on behalf of CFTR2, CFF, or Johns Hopkins and relevant third parties
such as CFF program participants and sponsors.
By submitting personal information through the Site, you authorize CFTR2, CFF, or Johns Hopkins to share this personal information for
the purposes identified, such as determining qualifications for grants, organizing fund-raising events, responding to User inquiries, processing donations, or
determining eligibility for CFF programs.
If you do not want CFF to disclose your personal information to third parties, you may opt-out by submitting a written request to
CFF at Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20872, Attn: Communications Department.
If you opt-out, you may not be able to participate in or qualify for CFF grants, or fund-raising events or programs, you may not receive
the information you requested, and CFF may not be able to inform you of new programs, events, developments, products and services. CFTR2, CFF, or Johns Hopkins may
share non-personal, non-individual information in aggregate form with third parties.
Notwithstanding other provisions of this privacy policy, we may disclose personal information in special cases when we have found it
necessary to identify, contact or bring legal action against someone who may be violating any user agreement or may be causing injury to or interference with CFTR2,
CFF, or Johns Hopkins or its Users, or anyone else that could be harmed by such activities.
CFTR2, CFF and Johns Hopkins reserve the right to disclose your personal information as explicitly set forth in this privacy policy or
any user agreement agreed to by you, or as otherwise required by government or law enforcement officials. CFTR2, CFF, or Johns Hopkins can, and you hereby authorize
us to, disclose any information to law enforcement or other parties that CFTR2, CFF, or Johns Hopkins in their sole discretion, believes is required or appropriate
in order to comply with the law.
CFTR2, CFF, or Johns Hopkins may assign, sell, license, or otherwise transfer to a third party, your name, address, e-mail address, and
any other personal information in connection with an assignment, sale, joint venture, or other transfer or disposition of a portion or all of the assets or stock of
CFTR2, CFF, or Johns Hopkins or its affiliated entities.
Applicable Law/International Issues
Because we are committed to protecting your privacy, personal information that is submitted to this Site will be collected, processed,
stored, disclosed and disposed of in accordance with applicable U.S. law. If you are a non-U.S. user, you acknowledge and agree that we may collect and use your
personal data and disclose it to other entities, as discussed above in "Who We Share It With," outside your resident jurisdiction.
In addition, such personal information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide
the degree of protection for personal information that is available in other countries. By providing us with your personal information, you acknowledge that your
have read this privacy policy, understand it, agree to its terms and consent to the transfer of such information outside your resident jurisdiction.
If you do not consent to the terms of this privacy policy, please do not use this Site, but if you have already provided us with personal
information, please send us a written request to Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20872, Attn: Communications Department, or send an e-mail
to info@cff.org and let us know how you would like us to handle such information.
Opt-Out Policy
You may request not to be contacted by the CFF in connection with any new services, updates, programs or promotions. Requests not to be
contacted by the CFF should be sent in writing to: Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20872, Attn: Communications Department, or send an
e-mail to info@cff.org. You also may make your request verbally by calling (800) FIGHT CF (344-4823).
Security
This Site has security measures in place to protect against the loss, misuse and alteration of information under our control. The
Foundation employs industry-standard SSL encryption software that encrypts all personal information transmitted via its website. Furthermore, all transactional data
collected is protected against unauthorized access with the use of digital certificates that are issued by VeriSign, a leader in the field of Internet security and
digital certificates.
However, we cannot guarantee that such security measures will be sufficient, will not be breached, and that your personal information
may not be disclosed or otherwise accessed in an unauthorized manner. Certain information may be transmitted to you by electronic mail. Although it is illegal to
intercept or disclose these messages under Federal law, these transmissions are not secured.
Policy Changes
This privacy policy may be modified. Any changes to the CFTR2 privacy policy will be posted on the Site. All information submitted
through this Site is subject to the terms and conditions of this privacy policy, as it may be amended from time to time.
How to Contact Us
If you have any questions about the Site, our privacy policy or the information we collect, please contact us
cftr2@jhmi.edu
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Permitted use available to clinicians, patients, and family members for clinical, research, and educational uses only. All other rights reserved.
@ Copyright 2011 US CF Foundation, Johns Hopkins University, The Hospital for Sick Children. |
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