Privacy Statement

Your privacy is important to us. Cure Alveolar Soft Part Sarcoma International (“iCureASPS”) has created this statement to demonstrate our commitment to privacy and to provide you with our online information practices, including the choices you can make about the way your information is collected and used. Please read this statement in conjunction with our Terms of Use policy.

About this Privacy Statement and Using the iCureASPS Site

This Privacy Statement applies to the iCureASPS site only. The iCureASPS site contains links to other sites. Once you enter another site, be aware that iCureASPS is not responsible for the privacy practices of such other sites. We encourage you to look for and review the privacy statements of each and every website that you visit through a link on the iCureASPS site.

Types of Information We Collect

You may visit our site without submitting any information about yourself. If you register or send us a communication via our guestbook or discussion forum you will be asked to submit information about yourself. We will use this information for replying to your message or forwarding the requested information, and it will optionally be posted on the website.

Please note that iCureASPS will not respond to any question concerning a specific medical or health condition. If you submit such a request you will receive a standard response that you should consult with your own health care professional. We will not intentionally share the contents of any communication directed solely for iCureASPS with any third party. However, due to the nature of electronic communications, we cannot and do not provide any assurances that the contents of your electronic communications will not become known or accessible to third parties. WE URGE YOU NOT TO PROVIDE ANY CONFIDENTIAL INFORMATION ABOUT YOU OR YOUR HEALTH TO US VIA ELECTRONIC COMMUNICATION. If you do so, it is at your own risk.


Our site does not use any personally identifiable information through the use of “cookies”, which is a piece of data stored on the user’s hard drive containing information about the user. Usage of cookies in no way links to any personally identifiable information while on our site. Once the user closes their browser, the cookie simply terminates. For instance, by setting a cookie on our site, the user would not have to log in a password more than once, thereby saving time while on our site. If a user rejects the cookie, they still can productively use our site. The only drawback to this is that the user will be limited in some areas of our site. Your browser software can be set to reject or accept all cookies. Most browsers offer instructions on how to reset the browser to reject cookies in the “Help” section of the toolbar.

Some of our business partners use cookies on our site (for example, advertisers). However, we have no access to or control over these cookies. “Cookies” are nuggets of information that are placed by a web site in a storage place on your own computer. The types of information we collect with cookies include the name of your Internet service provider, the web site that referred you to us (if any), the date and time our web site was accessed, the page or pages visited, and your IP address. Our cookies do not contain information that is, in itself, personally identifying.

Log Files

Our site may log IP addresses of visitors, but only to administer the site and diagnose problems with our servers. We also use cookies to customize content specific to your interests, to ensure that you do not see the same content repeatedly unnecessarily and to store your password so you do not have to re-enter it each time you visit the site.

Web Beacons

We also may use Web Beacons to collect Non-Personal Information about your use of our site. The information collected by Web Beacons (i) allows us to statistically monitor how many people are using our site and (ii) for what purposes these actions are being taken. Our Web Beacons are not used to track your activity outside of our site. We do not link Non-Personal Information from Web Beacons to Personally Identifiable Information without your permission and do not use Web Beacons to collect or store Personal Health Information about you.  “Web Beacons” (also often referenced as “clear GIFs”, “web bugs”, “1-by-1 GIFs”, “Single-Pixel GIFs”, “1 x 1 Pixels”, or “clear Pixels”) are tiny graphic image files, imbedded in a web page in GIF, jpeg or HTML format, that provide a presence on the web page and send back to its home server (which can belong to the host site, a network advertiser or some other third party) information from the Users’ browser, such as the IP address, the URL of the page on which the beacon is located, the type browser that is accessing the site and the ID number of any Cookies on the Users’ computer previously placed by that server.


We will share aggregated demographic information with our partners and advertisers. This is not linked to any personal information that can identify any individual person.  We use an outside credit card processing company to process tax deductible contributions.

Hyperlinks or Links

This site contains links to other sites. Please be aware the iCureASPS is not responsible for the privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of each and every site that collects personally identifiable information. This Privacy Statement applies solely to information collected by this site.  Please refer to Terms of Use for additional information regarding links to other sites.

Website Registration

After you have registered as a member of iCureASPS, you may choose to use certain iCureASPS interactive content, tools and services that may ask you to voluntarily provide other types of information about yourself including Personal Health Information. Some of the tools (like certain discussion forums and guestbooks) store your Personal Health Information in accordance with the authorization you provide at the time you use the tool.


If a user wishes to register as a member, the registrant has the opportunity to opt-out of receiving occasional updates from iCureASPS.

Discussion Forum/Message Boards, Guestbook and other Public Forums

As a service to our users, iCureASPS (or links to a third party site) features discussion forums/message boards, guest books and other public forums where users with similar interests or medical conditions can share information and support one another or where users can post questions for experts to answer. We also facilitate online discussions moderated by medical or healthcare experts (via links to third party sites).  Any information shared (including Personally Identifiable and Personal Health Information) that you reveal in a discussion forum/message board, guestbooks, or online discussions via links to third party sites is by design open to the public and is not a private, secure service. You should think carefully before disclosing any Personally Identifiable or Personal Health Information in any public forum. What you have written may be seen, disclosed to or collected by third parties and may be used by others in ways we are unable to control or predict, including to contact you for unauthorized purposes.


This web site takes every precaution to protect our users’ information. When users submit sensitive information via this site, your information is protected both on-line and off-line.


We are committed to protecting the privacy of children. The iCureASPS site and services are not designed or intended to attract children under the age of 13. We do not collect Personally Identifiable Information from any person we actually know is under the age of 13. A parent or guardian, however, may use the iCureASPS site to discuss and communicate Personally Identifiable Information regarding their child. The parent or guardian is solely responsible for accuracy and disclosure of providing such information regarding their child. Furthermore, the parent or guardian assumes full responsibility for ensuring that the registration information is kept secure and that the information submitted is accurate. The parent or guardian also assumes full responsibility for the interpretation and use of any information or suggestions provided through the iCureASPS site for the minor.

Notification of Changes

We reserve the right, at any time and without notice, to add to, change, update, or modify this Privacy Statement, simply by posting such change, update or modification on this site. Any such change, update or modification will be effective immediately upon posting on this site.

Contact Information

If you have any questions about this Privacy Statement or the practices of this site, you can contact us at  Also, please read the Terms of Use for this site.

The Website for Cure Alveolar Soft Part Sarcoma International, its contents and programs, is provided for informational and educational purposes only and is not intended as medical advice nor is it intended to create any physician-patient or clinical relationship. Please remember that this information should not substitute professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking medical advice because of materials read on this Website. The views or opinions expressed in the resources provided do not necessarily reflect those of Cure Alveolar Soft Part Sarcoma International or its staff. By using this Website, you accept these: Terms of Use. Please read our Privacy Statement.