Updated: April 3, 2019
The Malan Syndrome Foundation is committed to ensuring your privacy and the privacy of the individuals who participate in our Site and communicate with us over the Internet (our “Community”). This Privacy Statement details the types of personal information we may collect, why we collect it, and with whom we may share it. We also describe the measures we use to protect the personal information we collect and how you can contact us with any questions.
The Malan Syndrome Foundation Mission
The mission of the Malan Syndrome Foundation (the “Foundation” or “We”) is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research.
Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis.
Promote knowledge development, awareness and sharing of information.
Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders.
Please visit Our Mission page for more information on our work and purpose.
What is Covered by this Privacy Statement
The following services are among those the Foundation provides or may provide to our visitors, members of the public, families who interact or contact us, donors, individuals who attend our events, grant applicants and recipients, healthcare practitioners, those who register on our website malansyndrome.org (“the Site”), and others.
The Foundation may:
offer public information, including educational and awareness resources about Malan syndrome
allow families and patients in the Malan 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;
engage in fundraising through website, email, mail, and other solicitations; and
communicate with Community volunteers and individuals interested in learning more about Malan syndrome or notifying of events.
What is Not Covered by This Privacy Statement
The Malan Syndrome Patient Registry. The Patient Registry is offered and maintained by Sanford Research CoRDs. Please visit our information page for Frequently Asked Questions about the Patient Registry.
Employment or potential employment-related information is not covered by this Privacy Statement.
The Foundation’s e-commerce shop.
Third-party websites unaffiliated with the Foundation or the Site.
Personal Information We Collect
To further the Mission and purposes of the Foundation, We may collect the following types of personal information from you with your consent:
Site Account information, including a login email and password.
Contact information, including name, email, address, phone and mobile phone number.
Family information, such as the information about your children and partner including photos, stories and information you wish to share with the Community.
Social Media information, including profile information and content that you like or mention the Foundation, subject to the terms of the relevant Social Media platform.
Cookies and Online Technologies
This Site is intended for use by adults and adults on behalf of children. The Foundation does not knowingly collect personal information directly from children and under no circumstances may a minor under the age of 13 use the Site. Children should consult a legal guardian in order to provide personal information to the Foundation or use the Site.
How We Use and Share your Personal Information
The Foundation will use your personal information to further our Mission as described in this Statement, including sharing with the Community via our Site (such as through Family Connect), Newsletter or other communications and through our Social Media channels. You may opt-out of communications from the Foundation through the means they were received or by sending us a request through Contact Us.
If you provide personal information to us via the Site, We may share it with service providers assisting us in activities such as technology or communications management. These service providers are not authorized to use or disclose the personal information except as necessary to perform services on our behalf or to comply with legal requirements. Unless you have given us consent, we will not use your personal information for any purposes other than those described when it is collected.
The Foundation may share aggregate information with third parties to promote the Foundation’s services and the Site or to add to general knowledge concerning the public's need for education and treatment services. The Foundation will not sell or rent your personal information. The Foundation may disclose personal information about you if required by law, subpoena, court order, or valid legal process.
How We Secure your Personal Information
The Foundation is committed to maintaining the security and confidentiality of personal information it collects. While it is impossible to guarantee security measures will be fully capable of protecting personal information, we use appropriate administrative, technical, and physical security measures intended to protect against loss, misuse, improper access, disclosure, alteration, or destruction of personal information.
Updating or Correcting your Personal Information
To update your personal information on the Site, please login and visit “My Account”. If you need to update or correct other personal information collected by the Foundation, please send us a request at Contact Us.
International Data Transfers
The Foundation may transfer your personal information to our offices or service providers in various countries, including to the United States of America. If you submit your personal information to the Site, you are consenting to the international transfer of the information.
For questions related to this Statement or our Privacy practices, please contact us at: firstname.lastname@example.org.
Updates and Changes to this Privacy Statement
The Foundation reserves the right to revise this Statement from time to time. The date of the most recent version will be noted and posted on this page.