Privacy Policy

The World FSHD Alliance respects the privacy of all visitors to our website. We will not sell, share or distribute your information (regardless of whether you provide it to us via this website or by any other means) to any third party without your express permission. However, when you voluntarily disclose personal information online, such as on this website, message boards, chat rooms or through e-mail, that information may be collected, disclosed and used by others.

You may browse this website without identifying yourself or providing any personal information about yourself. However, we do collect general, non-personally identifiable information for the purpose of learning general demographic information, administering this website, tracking the number of visits to website pages, and similar purposes. If you request information, you will be asked to provide personal information such as your name, address, e-mail address and telephone number. We may use this information to communicate with you by e-mail and postal mail. If you do not wish to receive communications from the World FSHD Alliance, or wish to update any information on your records, please inform us at mwlong@fshdworldalliance.org.

The World FSHD Alliance will disclose information when legally required, such as in response to a subpoena or court order, and also may disclose information in response to the request of a law enforcement agency.

These privacy policies only apply to the World FSHD Alliance website. This website contains links to other websites, which are not affiliated with the World FSHD Alliance and for which we have no responsibility. We encourage you to read the privacy policies of those websites.

All access such as browser/web based management tools are encrypted using SSL based browser technologies using the most current security algorithm.