The National Foundation for Syndactyly is committed to protecting the privacy of our participating members. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, we make it available as a link on our home page. We define personal information to include: name(s), email address, mailing address, survey responses, registry information and non-public information included in your correspondence with us.
When you contact the The National Foundation for Syndactyly Family Support Coordinator at FamilySupport@nfsus.org your email address and other information included in your email may be forwarded to the appropriate person(s) within The National Foundation for Syndactyly for a response. A copy of your correspondence may be retained at The National Foundation for Syndactyly home office and also by the responding individual.
The National Foundation for Syndactyly has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, physicians, scientists, contributors and others. The National Foundation for Syndactyly will never release our mailing list or the names of our member families to any outside organization or third party unless required to do so by law. However, if an outside organization sends us information for distribution to The National Foundation for Syndactyly members and participants, we may mail it to you after proper approval.
Information determined to be confidential can only be released by written or verbal permission by the subject of the information or organization that owns the information. Verbal permission may be valid in limited circumstances. Any general release must be in writing. Information may be released if required by law, such as in response to an investigation or subpoena. The National Foundation for Syndactyly web site https://nfsus.org may provide a link to other sites that may be of interest. The National Foundation for Syndactyly is not responsible for the privacy practices or content of other such web sites.
The National Foundation for Syndactyly is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the privacy and security of all personal information in our possession. Access to personal information will be limited to The National Foundation for Syndactyly personnel and The National Foundation for Syndactyly subcontractors who have a need to use such information in the course of their work for the The National Foundation for Syndactyly. In all instances, this work will be directly overseen by The National Foundation for Syndactyly. All individuals will be instructed of their obligations under The National Foundation for Syndactyly confidentiality and security requirements.
2. Collection, Use and Disclosure of Information
a. Collection of Information. All of the information you provide to the The National Foundation for Syndactyly will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.
b. Use and Disclosure of Information. The goal of this database is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name, address, social security number has been removed) gathered from this profile will be made available to registrants of the Website in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. De-identified information may be disclosed to third parties and otherwise used in accordance with legal requirements.
The National Foundation for Syndactyly may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the website. These Outside Contractors may have limited access to information collected on the Website, including protected health information and personally identifiable information. In the course of providing such products or services, Outside Contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.
3. Withdrawal of Information
a. At any time, you have the right to withdraw your information from the Website registry database. You may exercise this right by contacting the The National Foundation for Syndactyly Director or the Family Support Coordinator and your account will be deactivated and the identifying information in your profile will be removed.
4. Protection of User Information
5. Ownership of Information
6. Third Party Notifications/Advertising
a. The National Foundation for Syndactyly reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. The National Foundation for Syndactyly database will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, The National Foundation for Syndactyly database assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
8. Log Files; Web Beacons
a. The National Foundation for Syndactyly database may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Website, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. The National Foundation for Syndactyly database may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
9. Website Links
10. Communications from The National Foundation for Syndactyly
a. From time to time, The National Foundation for Syndactyly or other related entities will notify users of updates and other valuable information about the The National Foundation for Syndactyly database, the Website and related clinical and research information. By using the website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by The National Foundation for Syndactyly and related entities, and to receiving such updates and information. The National Foundation for Syndactyly encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, The National Foundation for Syndactyly cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from The National Foundation for Syndactyly, such emails will clearly be from the The National Foundation for Syndactyly and will include instructions on how to unsubscribe from future emails.
11. Required Disclosures
a. You understand and agree that The National Foundation for Syndactyly may disclose information provided by you if in its good faith believe such disclosure is required by applicable law.
12. Contact Us; Member Accounts
13. Children under the Age of Thirteen (13)
14. Change of Control
15. U.S.-EU Safe Harbor Framework
The National Foundation for Syndactyly complies with the U.S.-EU Safe Harbor Framework and the U.S.-Swiss Safe Harbor Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information from European Union member countries and Switzerland. The National Foundation for Syndactyly has certified that it adheres to the Safe Harbor Privacy Principles of notice, choice, onward transfer, security, data integrity, access, and enforcement. To learn more about the Safe Harbor program, and to view The National Foundation for Syndactyly certification, please visit http://www.export.gov/safeharbor/ As part of our participation in the Safe Harbor program, we agree to resolve disputes you have with us in connection with our policies and practices through TRUSTe. If you would like to contact TRUSTe, visit https://feedback-form.truste.com/watchdog/request.”
16. Notification of Changes
2017 NFS All Rights Reserved
Copyright © 2017 The National Foundation for Syndactyly. All Rights