PRIVACY POLICY OF HYPOPARATHYROIDISM ASSOCIATION

 

For the purposes of this Privacy Policy, “the Association” will refer to the Hypoparathyroidism Association, Inc. a nonprofit organization incorporated in the state of Idaho. “The Website” will refer to the website owned and operated by the Hypoparathyroidism Association located at www.hypopara.org.

The Association is committed to protecting the privacy of our 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, phone number, survey responses, registry information and non-public information included in your correspondence with us.

When you contact the Association at admin@hypopara.org, or you use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within the Association. A copy of your correspondence may be retained at the Association home office and also by the responding individual.

The Association has established and maintains a mailing database. The mailing list includes affected individuals, family, friends, physicians, scientists, contributors and others interested in hypoparathyroidism.  The Association will never rent or sell our mailing list to any outside organization or third party.  However, if an outside organization sends us information for distribution to the Association members, we may mail it to you after the Board approves the mailing.

Information determined to be confidential can only be released by written or verbal permission from the person, or by the 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 Website provides links to other sites that may be of interest. The Association is not responsible for the privacy practices or content of other such web sites.

The Association 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 Association Executive Committee members and other approved individuals who have a need to use such information in the course of their work on approved projects. In all instances, this work will be directly overseen by a member of the Association Executive Committee. All individuals will be instructed and will be required to follow strict confidentiality requirements and protocol of the organization.

We suggest you read this Privacy Policy and Terms & Conditions of the Website located at www.hypopara.org prior to using the members’ area of the Website. By logging in to the members’ area of the Website, you agree to all the terms of the Privacy Policy and Terms & Conditions.  

The Association respects your privacy.  The Privacy Policy has been written so that you are aware of the information the Association collects from you, how that information is protected, and how it may be used. If you have any questions or comments regarding the Privacy Policy, or if you feel that the Hypoparathyroidism Association is not abiding by its posted Privacy Policy, please contact us at: admin@hypopara.org

1. General

This Privacy Policy outlines the type of information the Association collects from the users of the Website and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the Website. We encourage you to review the Privacy Policy periodically for any updates or changes

2. Collection, Use and Disclosure of Information

a. Collection of Information. All of the information you provide to the Association 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 the Association is to make the information you provided searchable, while protecting your identity. De-identified data (i.e., information where all personal identifiers such as name, address, email address, telephone number has been removed) gathered from your profile will be made available to legitimate researchers and organizations.  It is our belief and hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. The Association will perform the searches for specific questions within our patient registry and provide de-identified reports back the requesting organization or to you.

The Association may employ independent contractors, vendors and suppliers 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

At any time, you have the right to withdraw your information from the Website registry database. You may exercise this right by contacting the Association at admin@hypopara.org and your profile will be removed.

4. Protection of User Information

All users are required to review and abide by the Website Terms & Conditions and the Privacy Policy. The Association will use commercially reasonable methods to protect the security of information and data submitted to the Website. We employ best practices from our networking to our secure servers, in order to protect data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.

5. Ownership of Information

All of the information you provide to the Association in connection with the Website is owned by the Association. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no economic benefit.

6. Third Party Notifications/Advertising

The Association reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your personal information such as name, address, email address or telephone number) in order to provide advertisements or relevant notifications on the Website about goods and services that may be of interest to you. The Association will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, the Association assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

7. Cookies

When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. In addition, in the course of serving advertisements to this site, our third-party advertisers may place or recognize a unique "cookie" on your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by the Association to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, he or she may still use the Site. Some of the Association’s business partners, advertisers and sponsors use cookies, but the Association has no access to or control over these cookies.

8. Log Files; Web Beacons

The Association 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. Hypoparathyroidism Association 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

The Website may contain links to other web sites. This Privacy Policy applies solely to information collected on or submitted to the Website. The Association is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website. The Association encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.

10. Communications From The Hypoparathyroidism Association

From time to time, the Association will notify users of updates and other valuable information about the Association, 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 Association, and to receiving such updates and information. Emails coming directly from the Association will clearly be from the Hypoparathyroidism Association and will include instructions on how to unsubscribe from future emails. 

11. Required Disclosures

You understand and agree that the Association may disclose information provided by you if in its good faith belief such disclosure is required by applicable law.

12. Contact Us; Member Accounts

If you elect to contact the Association through contact information provided on the Website, or register for an account, you may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing your inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration), the Association stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

13. Children Under The Age Of Thirteen (13)

The Association is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our Website is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website at any time or in any manner, without parental supervision. In order to comply with the Children's Online Privacy Protection Act, the Association will not knowingly collect personally identifiable information from children under the age of thirteen (13), without parental consent and representation. By providing personal identifiable information through the Website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, the Association learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, the Association will take the appropriate steps to delete such information.

14. Notification of Changes

It is your responsibility to review the Privacy Policy periodically to be aware of the ways that your information may be used.  The Association reserves the right to change the Privacy Policy at any time, without prior notice. 

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