Privacy Policy
Rare and Undiagnosed
Protecting your private information is our priority. This Statement of Privacy applies to the
www.rareundiagnosed.org and Rareundiagnosed.org and governs data collection and usage. For
the purposes of this Privacy Policy, unless otherwise noted, all references to Rareundiagnosed.org
include www.rareundiagnosed.org and RUN. The RUN website is a Advocacy and Fund Raising
site. By using the RUN website, you consent to the data practices described in this statement.
Collection of your Personal Information
RUN may collect personally identifiable information, such as your name. We may gather additional
personal or non-personal information in the future.
Information about your computer hardware and software may be automatically collected by RUN.
This information can include: your IP address, browser type, domain names, access times and
referring website addresses. This information is used for the operation of the service, to maintain
quality of the service, and to provide general statistics regarding use of the RUN website.
Please keep in mind that if you directly disclose personally identifiable information or personally
sensitive data through RUN’s public message boards, this information may be collected and used
by others.
RUN encourages you to review the privacy statements of websites you choose to link to from
RUN so that you can understand how those websites collect, use and share your information.
RUN is not responsible for the privacy statements or other content on websites outside of the
RUN website.
Use of your Personal Information
RUN collects and uses your personal information to operate its website(s) and deliver the services
you have requested.
RUN may also use your personally identifiable information to inform you of other products or
services available from RUN and its affiliates. RUN may also contact you via surveys to conduct
research about your opinion of current services or of potential new services that may be offered.
RUN does not sell, rent or lease its customer lists to third parties.
RUN may share data with trusted partners to help perform statistical analysis, send you email or
postal mail, provide customer support, or arrange for deliveries. All such third parties are
prohibited from using your personal information except to provide these services to RUN, and
they are required to maintain the confidentiality of your information.
RUN will disclose your personal information, without notice, only if required to do so by law or in
the good faith belief that such action is necessary to: (a) conform to the edicts of the law or comply
with legal process served on RUN or the site; (b) protect and defend the rights or property of
RUN; and, (c) act under exigent circumstances to protect the personal safety of users of RUN, or
the public.
Security of your Personal Information
RUN secures your personal information from unauthorized access, use or disclosure. When
personal information (such as a credit card number) is transmitted to other websites, it is protected
through the use of encryption, such as the Secure Sockets Layer (SSL) protocol.
Children Under Thirteen
RUN does not knowingly collect personally identifiable information from children under the age of
thirteen. If you are under the age of thirteen, you must ask your parent or guardian for permission
to use this website.
Opt-Out & Unsubscribe
We respect your privacy and give you an opportunity to opt-out of receiving announcements of
certain information. Users may opt-out of receiving any or all communications from RUN by
contacting us here:
– Web page: http://rareundiagnosed.org/contact-us/
– Email: gina@rareundiagnosed.org
– Phone:(310) 883-4353
Changes to this Statement
RUN will occasionally update this Statement of Privacy to reflect company and customer
feedback. RUN encourages you to periodically review this Statement to be informed of how RUN
is protecting your information.
Contact Information
RUN welcomes your questions or comments regarding this Statement of Privacy. If you believe
that RUN has not adhered to this Statement, please contact RUN at:
Rareundiagnosed.org
3732 Sunridge Drive
Park City, Utah 84098
Email Address:
gina@rareundiagnosed.org
Telephone number:
(310) 883-4353
Effective as of January 01, 2016