EBCare Registry


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Privacy Policy

EBCare, LLC is committed to protecting the privacy of our families. 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 your local DEBRA office, the EBCare Registry Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , 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 EBCare, LLC or our professional advisors for a response. A copy of your correspondence may be retained at the EBCare, LLC home office and also by the responding individual.
 
EBCare, LLC has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, physicians, scientists, contributors and others interested in epidermolysis bullosa. EBCare, LLC 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 EBCare, LLC families, 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 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 EBCare Registry web site provides links to other sites that may be of interest. EBCare, LLC is not responsible for the privacy practices or content of other such web sites.
 
EBCare, LLC 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 EBCare, LLC board members and other 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 EBCare, LLC Board of Directors. All individuals will be instructed in the confidentiality requirements of the organization.
 
You must read this Privacy Policy (the “Privacy Policy”) and the Website (defined below) terms of use (the “Terms and Conditions”) prior to using any portion of the EBCare Registry Website located at www.ebcare.org (the “Website”). By using the Website, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website.  The Website is owned and operated by EBCare, LLC.  EBCare, LLC respects your privacy and has written the Privacy Policy so that you are aware of the information EBCare, LLC collects from you, how that information is protected, and how it is used.  If you have any questions or comments regarding the Privacy Policy, or you feel that EBCare, LLC is not abiding by its posted Privacy Policy, please contact us at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
 
1. General
a. This Privacy Policy outlines the type of information EBCare, LLC 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 EBCare, LLC 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 registry 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. EBCare, LLC will perform the searches for specific questions within the registry and provide de-identified reports back to you or the requesting party.
 
De-identified information may be disclosed to third parties and otherwise used in accordance with legal requirements.
 
EBCare, LLC 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 EBCare Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it and your profile will be removed. 
 
4. Protection of User Information
a. All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy.  EBCare, LLC 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 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.
 
6. Ownership of Information
a. All of the information you provide to EBCare, LLC in connection with the Website is owned by EBCare, LLC.  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.

7. Third Party Notifications/Advertising
a. EBCare, LLC 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 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.  EBCare, LLC will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, EBCare, LLC assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
 
8. Cookies
a. 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 EBCare, LLC 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 EBCare, LLC’s business partners, advertisers and sponsors use cookies, but EBCare, LLC has no access to or control over these cookies.
 
9. Log Files; Web Beacons
a. EBCare, LLC 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. EBCare, LLC 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.
 
10. Website Links
a. The Website may contain links to other web sites. This Privacy Policy applies solely to information collected on or submitted to the Website. EBCare, LLC is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website. EBCare, LLC encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.
 
11. Communications From EBCare, LLC
a. From time to time, EBCare, LLC or other related entities will notify users of updates and other valuable information about EBCare, LLC, 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 EBCare, LLC and related entities, and to receiving such updates and information.  EBCare, LLC encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, EBCare, LLC 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 EBCare, LLC, such emails will clearly be from EBCare, LLC and will include instructions on how to unsubscribe from future emails.
 
12. Required Disclosures
a. You understand and agree that EBCare, LLC may disclose information provided by you if in its good faith belief such disclosure is required by applicable law.
 
13. Contact Us; Member Accounts
a. If you elect to contact EBCare, LLC 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).  EBCare, LLC 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.
 
14. Children Under The Age Of Thirteen (13)
a. EBCare, LLC 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. In order to comply with the Children's Online Privacy Protection Act, EBCare, LLC will not knowingly collect personally identifiable information from children under the age of thirteen (13). 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, EBCare, LLC learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, EBCare, LLC will take the appropriate steps to delete such information.
 
15. Notification Of Changes
You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used.  EBCare, LLC reserves the right to change the Privacy Policy at any time, without prior notice.