Privacy Statement

Welcome to aicardisyndromefoundation.org (the “Site”).

We understand that privacy online is important to users of our Site, especially when conducting business. This statement governs our privacy policies with respect to those users of the Site (“Visitors”) who visit without transacting business and Visitors who register to transact business on the Site and make use of the various services offered by aicardisyndromefoundation.org (collectively, “Content”) (“Registered Users”).

Personally Identifiable Information:

Refers to any information that identifies or can be used to identify, contact, or locate the person to whom such information pertains, including, but not limited to, name, address, phone number, fax number, email address, financial profiles, social security number, and credit card information. Personally Identifiable Information does not include information that is collected anonymously (that is, without identification of the individual user) or demographic information not connected to an identified individual.

What Personally Identifiable Information is Collected?

We may collect basic user profile information from all of our Visitors. We collect the following additional information from our Registered Users: the names, addresses, phone numbers, email addresses, email preferences and answers to various questions asked of Registered Users when presented with one of our Site’s registration forms.

What Organizations are Collecting the Information?

In addition to our direct collection of information, our third party service vendors (such as credit card companies, clearinghouses and banks) who may provide such services as credit card processing may collect this information from our Visitors and Registered Users. We do not control how these third parties use such information, but we do ask them to disclose how they use personal information provided to them from Visitors and Registered Users. Some of these third parties may be intermediaries that act solely as links in the distribution chain, and do not store, retain, or use the information given to them.

How Does the Site Use Personally Identifiable Information?

We use Personally Identifiable Information to customize the Site, to make appropriate service offerings, and to fulfill buying and selling requests on the Site. We may email Visitors and Registered Users about research or purchase and selling opportunities on the Site or information related to the subject matter of the Site. We may also use Personally Identifiable Information to contact Visitors and Registered Users in response to specific inquiries, or to provide requested information.

With Whom May the Information Be Shared?

Personally Identifiable Information about Registered Users may be shared with other Registered Users who wish to evaluate potential transactions with other Registered Users. We may share aggregated information about our Visitors, including the demographics of our Visitors and Registered Users, with our affiliated agencies and third party vendors. We also offer the opportunity to “opt out” of receiving information or being contacted by us or by any agency acting on our behalf.

How is Personally Identifiable Information Stored?

Personally Identifiable Information collected by aicardisyndromefoundation.org is securely stored and is NOT accessible to third parties or employees and agents of aicardisyndromefoundation.org except for use as indicated above.

What Choices are Available to Visitors regarding collection, use and Distribution of the Information?

Visitors and Registered Users may opt out of receiving unsolicited information from or being contacted by us and/or our vendors and affiliated agencies by responding to emails as instructed, or by contacting us at info@aicardisyndromefoundationorg.local.

Are Cookies Used on the Site?

Cookies are used for a variety of reasons. We use Cookies to obtain information about the preferences of our Visitors and the services they select. We also use Cookies for security purposes to protect our Registered Users. For example, if an Registered User is logged on and the site is unused for more than 10 minutes, we will automatically log the Registered User off.

How Does this Site Use Login & Registration Rnformation?

This Site uses login information, including, but not limited to, IP addresses, ISPs, and browser types, to analyze trends, administer the Site, track a user’s movement and use, and gather broad demographic information.

What Partners or Service Providers Have Access to Personally Identifiable Information from Visitors and/or Registered Users on the Site?

We’ve entered into and will continue to enter into partnerships and other affiliations with a number of vendors. Such vendors may have access to certain Personally Identifiable Information on a need to know basis.

Our privacy policy does not cover their collection or use of this information.

Disclosure of Personally Identifiable Information to comply with law. We will disclose Personally Identifiable Information in order to comply with a court order or subpoena or a request from a law enforcement agency to release information. We will also disclose Personally Identifiable Information when reasonably necessary to protect the safety of our Visitors and Registered Users.

How Does the Site Keep Personally Identifiable Information Secure?

All of our employees and agents are familiar with our security policy and practices. The Personally Identifiable Information of our Visitors and Registered Users is only accessible to a limited number of qualified employees and agents who are given a password in order to gain access to the information. We audit our security systems and processes on a regular basis. Sensitive information, such as credit card numbers or social security numbers, are not stored within the Site. While we take commercially reasonable measures to maintain a secure site, electronic communications and databases are subject to errors, tampering and break-ins, and we cannot guarantee or warrant that such events will not take place and we will not be liable to Visitors or Registered Users for any such occurrences.

How Can Visitors Correct Any Inaccuracies in Personally Identifiable Information?

Visitors and Registered Users may contact us to update Personally Identifiable Information about them or to correct any inaccuracies by emailing us at info@aicardisyndromefoundationorg.local.

Can a Visitor Delete or Deactivate Personally Identifiable Information collected by the Site?

We provide Visitors and Registered Users with a mechanism to delete/deactivate Personally Identifiable Information from the Site’s database by contacting info@aicardisyndromefoundationorg.local. However, because of backups and records of deletions, it may be impossible to delete a Visitor’s entry without retaining some residual information. An individual who requests to have Personally Identifiable Information deactivated will have this information functionally deleted, and we will not sell, transfer, or use Personally Identifiable Information relating to that individual in any way moving forward.

What Happens if the Privacy Policy Changes?

We will let our Visitors and Registered Users know about changes to our privacy policy by posting such changes on the Site. However, if we are changing our privacy policy in a manner that might cause disclosure of Personally Identifiable Information that a Visitor or Registered User has previously requested not be disclosed, we will contact such Visitor or Registered User to allow such Visitor or Registered User to prevent such disclosure.

Links to External URLs:

This web site contains links to other web sites. Please note that when you click on one of these links, you are moving to another web site. We encourage you to read the privacy statements of these linked sites as their privacy policies may differ from ours. Please be aware that we are not responsible for the content or privacy practices of such other sites.

©2014 Aicardi Syndrome Foundation. All rights reserved.

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