Privacy Policy

Updated: March 11, 2020

Privacy Policy Terms

The Smith-Kingsmore Syndrome Foundation operates the smithkingsmore.org domain, and is committed to ensuring the privacy of the individuals who use it. The below information details the types of personal information that may be collected, why it is collected, and with whom it may be shared. The Smith-Kingsmore Syndrome Foundation and its affiliates reserve the right to modify the policy terms at any time.

What is Covered by this Privacy Policy

The following services are among those we provide or may provide to our visitors, members of the public, families who interact or contact us, donors, individuals who attend our events, healthcare practitioners, and others. The Smith-Kingsmore Syndrome Foundation may:

  • Offer public information, including educational and awareness resources about Smith-Kingsmore syndrome;
  • Allow families and patients in the Smith-Kingsmore syndrome community to connect with others who want to interact via emails, newsletters, blogs, forums, or events;
  • Educate patients to better interact with their medical practitioners and providers;
  • Conduct surveys;
  • Engage in fundraising through website, email, and other solicitations;
  • Communicate with volunteers and individuals interested in learning more about Smith-Kingsmore syndrome or notifying of events; and
  • Participate in any activity deemed by the Board of Directors to further our Mission.
What is Not Covered by This Privacy Policy
  • Third-party websites unaffiliated with Smith-Kingsmore Syndrome Foundation or the website.
  • Any individual or party holding themselves out to be associated with the Smith-Kingsmore Syndrome Foundation that has not received approval by the Board of Directors to be acting in that capacity.
Information Collection and Use

Data will be captured or retained only as needed to carry out our business as a not-for-profit serving people and families impacted by Smith-Kingsmore syndrome. Data will be removed as is reasonably feasible with a written request.

We collect and hold data to:
  • Communicate with Smith-Kingsmore syndrome-affected families for the purposes of providing support and information, including up-coming events and fundraisers;
  • Track usage of our website to understand usage patterns as we seek to make the website more user-friendly and effective (e.g., via Google analytics);
  • Communicate with donors, recognize and thank them and keep them informed of our work;
  • Communicate with volunteers and other supporters of Smith-Kingsmore Syndrome Foundation (e.g., to share details of an event where they are attending or assisting);
  • Collect genetic and other medical reports for a genetic registry of Smith-Kingsmore syndrome affected individuals in order to support research and clinical trials;
  • Receive and track orders and payments for Smith-Kingsmore Syndrome Foundation merchandise; and
  • Further any activity deemed by the Board of Directors to advance our Mission.
Personal Data

To further the Mission and purposes of Smith-Kingsmore Syndrome Foundation, we may collect the below types of personal information from you. Please note that the below items are not an exhaustive list and serve for exemplary purposes only:

Contact information, including name, email, address, phone and mobile phone number.

Family information, such as information about the person with Smith-Kingsmore syndrome, including photos, stories and information you wish to share with our community.

If you choose to send us any photos, you consent to them being used by the Smith-Kingsmore Syndrome Foundation. You may notify us in writing if you wish to discontinue their use.

Emails may be retained in the normal course of business. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about Smith-Kingsmore Syndrome Foundation. You may notify us in writing if you wish to discontinue electronic communication.

This website is intended for use by adults and adults on behalf of children. The data we collect by its nature includes information about children and vulnerable adults. In each case, we seek the consent of the guardian or responsible adult before we capture this information. We do not knowingly collect personal information directly from children or vulnerable adults.

Usage Data

We may also collect information on how the website is accessed and used (“Usage Data”). This Usage Data may include information such as your computer’s Internet Protocol address (e.g. IP address), browser type, browser version, the pages of our website you visit, the time and date of your visit, the time spent on those pages, unique device identifiers and other diagnostic data.