Privacy Policy

The Genetic Alliance values its relationship with its community and uses commercially available technology to safeguard any personal information collected through the Site.

Important Note: Genetic Alliance’s Registries for All Diseases (hereinafter “Reg4ALL”) and Private Access’ TrialsFinder® service (both of which are linked through the Site) have and operate in accordance with a separate privacy policy. This paragraph provides a summary of that policy. The basic idea of Reg4ALL and TrialsFinder (which utilizes the Reg4ALL database) is that only you should control any and all data that you elect to provide concerning yourself and anyone for whom you have the legal right to act on their behalf regarding data sharing. Accordingly, to the maximum extent provided by law, the Genetic Alliance’s default privacy policy regarding such data is to not share any of this information you provide in Reg4ALL or TrialsFinder to anyone without your prior express consent. Each of these services utilize the “privacy preferences management system” by Private Access, Inc. to let you control who can see your information and for what purpose. Once you set your privacy preferences using Private Access, and/or to the extent you elect to update your preferences, the Genetic Alliance will abide by your then current preferences with respect to discovery, access, retrieval and/or any further use of any and all of your information. Both services include an audit log that lists by timestamp anyone who has had access to your account, each of your privacy preferences, and the disclosure of any identified information based thereon.

Unfortunately, the Internet is an open medium and no data transmission through the Internet is completely secure. You transmit personal information of any nature or sort at your own risk. The Genetic Alliance does not guarantee or warranty the security of information you transmit to, through or from the Site. Once received, your personal information is stored on secure servers. This section describes our overall practices.

In general, you may visit the Site without telling Genetic Alliance who you are or revealing personal information about yourself. However, the Genetic Alliance, its members and collaborative organizations as well as companies providing services to or on behalf of the Genetic Alliance (such as, without limitation, companies assisting with fundraising or marketing, surveys, database and other technology management and the like) may use various technologies, such as cookies and web beacons (1x1 pixels), to collect non-personally identifiable information discernable as a result of your visit. As technology evolves, we may gather information through other means as well. This may include, without limitation, a visitor's IP address, cookie information, web pages requested or viewed, date, time and domain type and responses to surveys. Information gleaned from your browser is automatically received and recorded on server logs. You may set your browser either to notify you when you receive a cookie or to refuse to accept cookies. However, if you do so you may not be able to participate in those features of the Site that require registration. The Genetic Alliance and/or its service providers may use this information to communicate with you via email or other means and/or for advocacy, to analyze statistics and trends, for reporting, research, and educational purposes whether commercial or non-commercial. They may also use and disclose non-personally identifiable data derived for scheduling and optimization of content delivery and, of course, if required to do so by law. IP addresses also may be collected for system administration to include in outgoing mail message headers.

Personal information is information you provide in any form that personally identifies you, such as your name, address, e-mail address, telephone number, and that is not otherwise publicly available. Personally identifiable information you voluntarily provide through the Site is collected and stored.

The Genetic Alliance may use any information gained through the Site for any legal purpose.

Notice to California residents about your California privacy rights: In addition to the other rights described in this policy, if you reside in California, you have the right to request information regarding the third parties with whom the Genetic Alliance has shared your personal information for direct marketing purposes during the past year. You have the right to submit a request to the Genetic Alliance at its designated address and receive the following information within 30 days of its receipt of that request: (1) the types of personal information disclosed to third parties during the immediately preceding calendar year, (2) the names and addresses of third parties that received the personal information, and (3) if the nature of a third party's business cannot be reasonably determined from the third party's name, examples of its products or services. You are entitled to receive a copy of this information in a standardized format. Information provided will not be specific to you individually. All such requests must be in writing and sent to the Genetic Alliance's designated address, which is 4301 Connecticut Avenue NW, Suite 404, Washington, DC 20008.

Except for any personally identifiable information the Genetic Alliance may collect from you under the guidelines established in this Privacy Section, any articles, comments, blogs, discussions, data, images, sounds, text, ideas, suggestions or enhancements, as well as anything embedded therein, material, information or other communication you transmit, submit, upload or post to the Site, including on the Resource Repository, or via email to Genetic Alliance (collectively, "User Submissions") are non-confidential and nonproprietary. The Genetic Alliance has no obligation to preserve the confidentiality of or refrain from disclosing any such User Submissions, has no liability for and will be free to copy, disclose, distribute, incorporate and otherwise use all or any part of any User Submissions for any and all commercial or noncommercial purposes. Please exercise caution and discretion in disclosing personal information through, including uploading photos to, the Resource Repository or any public forums.

If Genetic Alliance were to merge with another not-for-profit or if it were to cease operations, your information may be transferred to the surviving or acquiring entity and will then be subject to that entity's privacy policy. Your personal information may be disclosed if there is reason to believe that disclosure is necessary to identify, contact or bring legal action to enforce any of its rights, including against you or a third party, for nonpayment of any material available for purchase through the Site, violation of any agreement, and to prevent injury to or interference with the Genetic Alliance's rights or property, the rights or property of other Site users or anyone else that could be harmed by such activities. The Genetic Alliance may disclose or access account information when Genetic Alliance believes, in good faith, that the law requires it, for administrative and other purposes deemed necessary to maintain, service and improve the Site and the Genetic Alliance's services and to protect its rights or property. By accessing and using the Site, you agree that information you have provided may be used and disclosed as described above or as these Terms of Use may be modified from time to time.