Privacy Policy

Effective April 18, 2008

1. Identification. Welcome to the privacy policy of United Survivors with Epidermolysis Bullosa (USeb) on To be a member of USeb’s online services, we will be collecting personal information from you. From time to time, you may also receive surveys that will ask you more personal information. Participation is voluntary. We may also send you emails or other mailings to which you may also choose to respond or ignore.

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 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

5. Access. You may contact USeb ( 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.

6. Modifications in Privacy Policy. USeb reserves the right to modify this Privacy Policy without any notice to you. By using USeb’s services online, you acknowledge and agree that the current Privacy Policy will be binding on you and that past Privacy Policies may lose any legal effect, at the option of USeb.

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.

8. Enforcement. This privacy policy will be legally enforced in the State of Utah under its laws. In the event USeb violates its privacy policies, you may contact USeb by email ( or write to: USeb, 753 East 1000 North, Pleasant Grove, UT 84062. We will do our best to fix the problem created and will be willing to engage in good faith negotiations with you, if necessary.

9. Legal Remedies. By using any of USeb’s services online or otherwise, you acknowledge and agree that in the event of violations of the privacy policy by you or USeb, the legal remedies available are restricted to special damages for intentional misconduct (not general damages). Negligence (but not gross negligence) is not an action upon which you or USeb may collect damages.