Effective April 18, 2008
2. Use. When you provide USeb information in becoming a member, when filing out surveys, or responding to our emails and/or mailings, USeb will use the information solely for USeb purposes and will not sell or otherwise distribute your information to other persons or entities, including your email address, name, address, other contact information, or financial data. The mission of USeb is to assist individuals with epidermolysis bullosa (EB) become more self-reliant; therefore, all information gathered will be used ultimately for this purpose. USeb neither collects IP addresses for statistical purposes, nor places cookies on your computer. Exceptions: Donations. An exception that may occur in the sharing of some of your information is during transmission of donations that must go through a third-party. In those cases, only the essential data of payment information that is required for transmission of your donations will be processed. State or Federal Law. In the event that USeb is required by state or federal law to divulge information about a member or visitor to those authorized by State or Federal law to receive the information, USeb will only share that which is mandated.
3. Limits. You may limit the amount of information or the substance of your information by simply providing USeb with the minimum required information. The minimum required information will be designated by a *.
4. Choice. Although USeb will only use your information for its own purposes, you may email USeb at firstname.lastname@example.org with instructions on how to use your private information. USeb will consider them, but will not be bound by your instructions. If you want to be certain your information will only be used they way you wish it to be used, do not share it with USeb. If you do not want to receive email or mailings from us in the future, please let us know by sending us an email communicating this desire at email@example.com.
5. Access. You may contact USeb (firstname.lastname@example.org) and request access to the information you have provided USeb. USeb will not be bound by your request, but will make a good faith effort to comply with your desire.
7. Modifications in Your Information. USeb is under no obligation to correct factual inaccuracies in your information that we maintain about you. You may, however, email or send us a letter requesting a change and USeb will make a good faith effort to do so.
Copyright © 2017 EBsurvivors.org, Inc. All rights reserved.