Privacy, Copyright and Photo Use Policy

Privacy, Copyright and Photo Use Policy




Home » Privacy, Copyright and Photo Use Policy

Privacy Policy

The Progeria Research Foundation (PRF) believes that addressing concerns about online privacy is critical. PRF promises to protect the personal information given to us by visitors to PRF's website and information included on our electronic mail lists. Any information that you give to PRF will be held with the utmost care, and will not be used in ways that you have not consented to. A more detailed explanation about how we care for your personal information follows.

Collection and Use of Information:

Voluntary E-Mail Lists: Visitors to the PRF website are invited to sign up to receive news and information that may be of interest to them. To do this, visitors are asked to provide their certain contact information. We do not sell, rent, loan, trade, or lease the personal information on our list to anyone. Details on how to correct, change or remove subscription information from our email lists are provided in the text of each email distribution to the subscriber.

Browser information collected on the website: As with many website operators, PRF analyzes our website logs to constantly improve the value of our website to our visitors. We use an external service to provide reporting to us of browser accesses to our site. This includes page views, unique views, unique visitors, repeat visitors, frequency of visits, and peak-volume traffic periods. In our use of this service, we do not gather, request, record, require, collect, or track any Internet users' personally identifiable information.

Use of Flash and cookies: We use a Flash applet on our website to provide each visitor with a unique aesthetic experience. The Flash applet queries your computer's clock to update the Miracle Minutes located on each page of our site. We do not link the any personally identifiable information to the Miracle Minutes time. We do not use cookies on our site.

Other uses of your personal information: In addition to using information about you for the specific purposes set out above, from time to time we may also use your personal information to send you news about our organization and promotional materials about PRF initiatives, provided that you have not opted out of receiving such information as described below.

Disclosure of Information and Donor Privacy Policy:

Resale or disclosure of information to third parties: PRF does not sell, rent, loan, trade, or lease personal information collected on our website, included on our e-mail lists or collected offline to any third party. PRF respects the privacy of its financial supporters. We will not share or sell a donor's personal information with any third party, nor send donor mailings on behalf of other organizations.

Copyright and Photo Use Policy:

All information and pages are Copyright © 2016 The Progeria Research Foundation, P.O. Box 3453, Peabody, MA 01961-3453. All rights reserved. Contact PRF for permission to reprint any portion of this site or materials displayed on this site for purposes other than personal, non-commercial use. No works or photos displayed on this website may be reproduced in any way or form without specific written permission from The Progeria Research Foundation, Inc. All such requests for permission must be made in writing and submitted to

Our Commitment to Data Security:

The Progeria Research Foundation implements physical, electronic and managerial procedures to ensure that your personal information is protected at all times. Our web site and email host is housed in an off-site, secured facility, and our servers are housed in our office. Employee access to personal information is strictly on a need to know basis. All employees sign a confidentiality agreement, and are made aware of the Privacy Policy and of any updates or changes to it. Employees are periodically reminded of the importance of protecting the privacy of our donors and Internet site users.

Data Quality and Access:

PRF provides you with the opportunity to know about the information that PRF holds about you, together with the ability to correct, amend or delete, as appropriate, any such information that is incomplete or inaccurate. Should you wish to exercise any of these options or should you have any questions or concerns about information that PRF has collected in relation to you, please feel free to contact us by sending a message to Specific details on how to correct, change or remove subscription information from our e-mail lists are provided in the text of each e-mail distribution.


Although most visitors to the PRF website indicate that they welcome details of PRF initiatives, educational efforts and other PRF materials, we acknowledge that individuals should have the right to choose. You will be given the right to opt out of receiving PRF information whenever you are asked to provide personal information on this site. If you do not opt out immediately, but later decide that you do not wish to receive future PRF communications, you can notify us of this as set out below.


If for any reason you believe that PRF has not adhered to these privacy principles, please notify us by e-mail at, and we will endeavor to review and correct the problem promptly. Please use the words "Privacy Policy" in the Subject line.

External Links:

This website provides links to various websites that PRF does not control. When you click on one of these links, you will be transferred out of our website and connected to the website of the organization or company that you selected. Even if an affiliation exists between our website and a third party website, we exercise no control over linked sites. Each of these linked sites maintains its own independent privacy and data collection practices and procedures. If you visit a website that is linked to our site, you should consult that site's privacy policy before providing any personal information.

Children's Privacy:

Because we care about the safety and privacy of children online, we comply with the Children's Online Privacy Protection Act of 1998 (COPPA). COPPA and its accompanying FTC regulation establish United States federal law that protects the privacy of children under 13. Our site is not intended to solicit information of any kind from children under 13.

It is possible that due to fraud or deception by others, we may unknowingly receive information pertaining to children under 13. If we are notified of this, once we have verified the information, we will promptly obtain parental consent or otherwise delete the information from our servers. If you want to notify us of our receipt of information in relation to children under 13, please do so by emailing us at

International Information Transfers:

Any personally identifiable information that you provide to PRF will be collected directly on servers located in the United States and maintained on servers located in the United States or other countries. If you are located outside the United States, this means that any information you provide will be transferred abroad. While PRF is committed to providing your information with the highest level of privacy protection, we believe you should know that the general level of protection for personal information in the United States may not be the same as that provided in other countries.

Terms and Modifications to Privacy Policy:

By using this website, you signify your agreement to the terms of our privacy policy. If you do not agree with these terms, please do not disclose any personal information through this site.

PRF may modify this privacy policy at any time at its discretion and modifications are effective upon being posted on this site. You are responsible for reviewing this privacy policy periodically to ensure that you are aware of any changes to it.

Contacting PRF on Privacy:

If you have any questions or concerns regarding privacy on the PRF website, please contact the Webmaster at

This policy was last updated on April 1, 2016.

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