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.
Tracking and Cookies Data
We use cookies and similar tracking technologies to track the activity on our website and we hold certain information. Cookies are files with a small amount of data which may include an anonymous unique identifier. Cookies are sent to your browser from a website and stored on your device. Other tracking technologies are also used such as beacons, tags and scripts to collect and track information and to improve and analyze our Service.
You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our website.
Examples of Cookies we use:
- Session Cookies. We use Session Cookies to operate our Service.
- Preference Cookies. We use Preference Cookies to remember your preferences and various settings.
- Security Cookies. We use Security Cookies for security purposes.
Transfer of Data
Your information, including personal data, may be transferred to, and maintained on, computers located outside of your state, province, country or other governmental jurisdiction where the data protection laws may differ than those from your jurisdiction.
If you are located outside United States and choose to provide information to us, please note that we transfer the data, including personal data, to the United States and process it there.
Your consent to this Privacy Policy followed by your submission of such information represents your agreement to the transfer of that information.
Smith-Kingsmore Syndrome Foundation will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this Privacy Policy and no transfer of your personal data will take place to an organization or a country unless there are adequate controls in place, including the security of your data and other personal information.
Security of Data & Disclosure
Your personal information will be held in strict confidence. We make efforts to keep personal data secure, through sharing it only with the required group of individuals and organizations. We will use our best efforts to protect data from loss, misuse or alteration. We will not sell data to other organizations or allow it to be used for marketing purposes.
While we strive to use commercially acceptable means to protect your personal data, we cannot guarantee its absolute security.
Smith-Kingsmore Syndrome Foundation may disclose your personal data in the good faith belief that such action is necessary to:
- Comply with a legal obligation;
- Protect and defend the rights or property of Smith-Kingsmore Syndrome Foundation;
- Prevent or investigate possible wrongdoing in connection with the Service;
- Protect the personal safety of users of the Service or the public;
- Protect against legal liability; or
- Further the Mission of the Foundation with approval by the Board of Directors
Links to Other Sites
Our website also contains links to the other websites. Upon leaving the Smith-Kingsmore Syndrome Foundation site, this Privacy Policy is not applicable and will be controlled by the Privacy standards in place at the other site. The Smith-Kingsmore Foundation has no control over and assumes no responsibility for the content, privacy policies or practices of any third party sites or services.
Rights
You have the right to request information about your personal data, obtain a copy of that personal data, or correct anything inaccurate in your personal data. Any corrections necessary to your personal data should be made in writing and will be corrected expeditiously.
Changes to This Privacy Policy
The Smith-Kingsmore Syndrome Foundation reserves the right to update this Privacy Policy at any time. The changes will be posted on this page.
You are advised to review this Privacy Policy periodically for any changes. Changes to this Privacy Policy are effective when they are posted on this page.
Grant Policy
Grant Policy Terms
With the funds Smith-Kingsmore Syndrome Foundation raises, we provide grants that will advance our mission. Our mission is to improve the quality of life for children and families impacted by Smith-Kingsmore Syndrome by supporting cutting-edge research and collaboration among medical professionals and strengthening community through worldwide awareness. We do not pay administrative fees or institutional indirect costs to grantee organizations. The entire grant must be provided to the grantee for the stated purpose.
Contact Us
If you have any questions about our Privacy Policy or Grant Policy, need any clarification on the abovementioned policies, or if you would like to contact us for more information, please contact us:
- By email: SKSFoundation@smithkingsmore.org
- By visiting this page on our website: www.smithkingsmore.org/contact
