"After my diagnosis I thought I could use my experience in business to promote MPN research and create scientific activity where very little had previously occurred." - Robert Rosen, Chairman, MPN Research Foundation

Privacy Policy

The MPN Research Foundation (the “Company”) respects your personal privacy and is committed to adhering to federal and state privacy laws and industry guidelines in order to protect you and your identity. This privacy policy (“Privacy Policy”) describes how we handle the personal information of users of the Company’s web site and the Company blog (collectively, the “Web Sites”). Please be sure to read this entire Privacy Policy before using or submitting information to the Web Sites.

If you are unwilling to accept the terms and conditions of this Privacy Policy, we ask that you do not use the Web Sites. By using the Web Sites, you agree to the terms of this Privacy Policy. When you submit information via the Web Sites, you consent to the collection, use and disclosure of that information in accordance with this Privacy Policy.

After reading this Privacy Policy, which is incorporated into and is a part of the Company’s Terms of Use, you will know:

1) What information the Company collects from you
2) How the Company may use and disclose information obtained through the Web Sites
3) What about third party services you access through the Web Sites
4) What choices you have about how the Company treats your information
5) How the Company protects your privacy
6) What the Company does about children using the Web Sites
7) How you can contact the Company

1. INFORMATION THE COMPANY COLLECTS FROM YOU

Active Information Collection
Like many other service providers and web site operators, we actively collect information from our visitors both by asking specific questions through the Web Sites and by permitting you to communicate with us directly via e mail. When you use the Web Sites, we will not collect any personally identifiable information about you unless you provide it to us voluntarily. We collect personal information when you sign up for newsletters or make a donation.

For purposes such as improving personalization of our services, we may receive information about you from other sources. Like the information you provide to us, we do not share this information with anyone except authorized third parties in connection with providing you with our services.

Passive Information Collection

As you navigate through a web site, certain information can be passively collected (that is, gathered without you actively providing the information) using various technologies, such as navigational data collection. For example, when using the Web Sites, we and/or our service providers may track IP addresses, use session and persistent cookies and assign Internet tags. Our system may also automatically gather information about the areas you visit on the Web Sites and collect operational information about the technology you use, such as your browser, operating systems, Internet Protocol address, system and application software, peripherals, Internet service providers and the domain name of the web site from which you linked to the Web Sites.

In addition, when you view the Web Sites, we may store some information on your computer. This information will be in the form of a cookie or similar file and will help us in many ways. Most Internet browsers enable you to erase cookies from your computer hard drive, block all cookies or receive a warning before a cookie is stored. However, if you choose to block cookies, you may not be able to access and use the Web Sites in their entirety. The Company does not collect personally identifiable information automatically, but we may tie information collected automatically to your previously submitted personally identifiable information.

The Company reserves the right to use electronic images known as web beacons—also referred to as single-pixel gifs—that permit the Company to count users who have visited those pages and for other related statistics (e.g., recording the popularity of certain web site content and verifying system and server integrity). Web beacons are not used to access your personal information on the Web Site; they are solely used to compile aggregated statistics concerning the use of the Web Site. Web beacons collect only a limited set of information including a cookie number, the time and date of a page view and a description of the page on which the web beacon resides.

We passively collect information to understand what areas of the Web Site are most popular, which areas may require improvement and what technologies are being used by our visitors. This information helps us to update and improve the Web Site. We also use this information for security purposes, to detect and to block security breaches and to provide you with a safe online environment.

2. HOW THE COMPANY MAY USE AND DISCLOSE INFORMATION OBTAINED THROUGH THE WEB SITE

Except as otherwise stated, we may use information collected to improve the Web Site, to customize the Web Sites to your preferences, to communicate information to you, for our marketing and research purposes and for any other purpose specified. In addition, we may make full use of all information acquired through the Web Site that is not in personally identifiable form.

Your contact information (e.g., e-mail addresses, phone number) will only be used for the purposes for which you supplied it to us (e.g., responding to your comments or requests for information, sending requested newsletters, etc.). Your financial information, such as credit card number, will only be used for processing donations you make to the Company.

If you provide personally identifiable information to the Web Site, we may combine such information with other actively collected information unless we specify otherwise at the point of collection.

We may disclose personally identifiable information you provide via the Web Site to third parties, but only:

(a) to contractors we use to support our business (such as technical support, web analytics, PayPal), in which case we will require such third parties to agree to use it for the same purposes;

(b) in the event of a sale, merger, liquidation, dissolution, reorganization, assignment or other transfer of the Company or the business of the Web Sites to which the information relates, in which case we will require any such buyer to agree to treat it in accordance with this Privacy Policy and use it for the same purposes;

(c) to respond to law enforcement requests, where required by applicable laws, court orders, or government regulations, or where the Company has reason to believe infringing material has been posted on the Web Sites; and

(d) in situations involving threats to the physical safety of any person.

The Company does not otherwise distribute to third parties your personally identifiable information. The Company, however, will have no liability for disclosure of information obtained due to errors in transmission or the unauthorized intervention of third parties.

The Company may provide aggregate statistics about its customers, sales, online traffic patterns and related information to reputable third parties, but these statistics will not include any personally identifying information.

3. WHAT ABOUT THIRD PARTY SERVICES YOU ACCESS THROUGH THE WEB SITE

There may be links on the Web Sites provided to other web sites and/or resources over which the Company has no control. These links are provided solely as a convenience to users and should not be construed as an affiliation with or endorsement by the Company. You access and use such other web sites, including the content, items or services on those web sites, solely at your own risk.

This Privacy Policy does not apply to the practices of third parties that the Company does not own or control. You should always review the privacy policies of these companies. The Company makes no representations or warranties with respect to the content, ownership or legality of any such linked web sites or services.

4. CHOICES YOU HAVE ABOUT HOW THE COMPANY USES YOUR INFORMATION

We strive to provide you with choices regarding the personal information you provide to us. We have created mechanisms to provide you with the following control over your information:

(a) You may also send us an e-mail message at jgordon@mpnresearchfoundation.org to request access to, correct or delete any personal information that you have provided to us.
(b) If you would not like to receive future emails, you may reply to any email with “Unsubscribe” as the subject, and we will remove you from our email list.

California Civil Code §1798.83 permits our visitors who are California residents to request certain information regarding the disclosure of personal information to third parties for direct marketing purposes. To make such a request, please send an e-mail to mwoehrle@mpnresearchfoundation.org or write us: 180 N. Michigan Avenue, Suite 1870, Chicago IL 60601. Please include your postal address in your request.

5. HOW THE COMPANY PROTECTS YOUR INFORMATION

We work hard to protect your personal information. We use both technical and procedural methods to maintain the integrity and security of our databases, including the use of SSL encryption for data transfer, restricted access to data, employee training and other methods. But you should keep in mind that no Internet transmission is ever completely secure or error-free.

The safety and security of your information also depend on you. Never share your password with anyone else, notify us promptly if you believe your password security has been breached, and remember to log off of the Web Sites before you leave your computer.

Any personally identifiable information or personally sensitive data that you disclose through the communities, forums, message boards, or other public online forums hosted on the Web Sites, may be collected and used by others. We recommend caution when giving out personal information to others in these public online forums.

The Web Sites may contain links provided to other sites and/or resources over which the Company has no control. These links are provided solely as a convenience to users and should not be construed as an affiliation with or endorsement by the Company of any content, items, or services on those third-party sites. You acknowledge and agree that the Company has no responsibility or liability for the availability of such external sites or resources, or for the content, advertising, products, or other materials available through such sites or resources.


6. WHAT THE COMPANY DOES ABOUT CHILDREN USING THE WEB SITE

The Web Sites are not intended for children under the age of 13. We will not knowingly collect personally identifiable information from visitors under the age of 13. We encourage parents to talk to their children about their use of the Internet and the information they disclose online. If a child has provided us with personally identifiable information, a parent or guardian of that child may contact us via e-mail at mwoehrle@mpnresearchfoundation.org if they would like this information deleted from our records. We will use reasonable efforts to delete the child's information from our databases.

7. HOW YOU CAN CONTACT THE COMPANY

If you have any questions, comments or concerns about this Privacy Policy or the information practices of this Web Site, please contact us at mwoehrle@mpnresearchfoundation.org.

If this Privacy Policy changes, the revised policy will be posted. Please check back periodically, and especially before you provide any personally identifiable information. Changes will not apply retroactively to personal information that was collected before the changes to the Privacy Policy, except as may be required by law.

This Privacy Policy was last updated on June 27, 2011.

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