Effective Date: September 7, 2021
What Information We Collect
UMDF collects limited information that is considered personally identifiable. You may provide certain information voluntarily, such as when you sign up to our registry, become a volunteer or ambassador or make donations. Additionally, there are instances where we may collect certain information from you automatically when you use the Site. This section explains what information we collect from you in more detail.
- Information You Provide to Us Voluntarily
The information we collect that you voluntarily provide to us includes the following:
- Contact information, such as your first name, last name, address, telephone number, e-mail address;
- Mitochondrial disease information, including whether there are affected family members, needs for support and other related information;
- Donation information, including donation amounts and other related information provided in connection with a donation or creation of a fund; and
- Other content, including information you provide in response to online surveys/other questionnaires
When you make a donation through the Site, UMDF related payment data such as your credit card number or other similar financial information is not provided to UMDF and instead are provided to our payment processor. For more information about our payment processor, please see the section entitled “Donation Platform” below.
- Information Collected Automatically
Information about your computer hardware and software is automatically collected by UMDF when you use the Site. This information may include your IP address, browser type, domain names, access times, geographic location, referring website addresses and other technical information such as protocol status and sub status, bytes sent and received and server information. We may also collect information about how you interact with the Site.
This information is used by us for our business purposes, including for the operation and improvement of the Site, for technical troubleshooting, to maintain quality of the Site and to provide general statistics regarding use of the Site.
- Information Received from Third Parties
We may receive a limited amount of information from third parties when you use our Site. For example, we use third-party payment processors when you want to donate or create a fund to raise money and awareness. The information we may receive from third-party payment processors include the donation amount, your name, billing address and email address. For more information about our payment processor, please see the section entitled “Donation Platform” below.
We may use “cookies” to recognize you when you visit the Site. This section provides more information about cookies, how they are used and how you can control cookies.
What are cookies? A cookie is a small file containing a string of characters that is sent to your computer when you visit a website or use an online service. When you visit the Site or use the service again, the cookie allows that website or online service to recognize your browser or device. Cookies may store unique identifiers, user preferences and other information.
Duration of Cookies. We may use “session cookies” or “persistent cookies.” Session cookies are temporary and expire once you close your browser or once your session ends. Persistent cookies remain on your device for much longer or until you or your browser erase them. Persistent cookies have varying durations that are dependent on their expiration date.
How do I control cookies? Web browsers allow some control of most cookies through the browser settings. To find out more about cookies, including how to manage and delete cookies, visit www.allaboutcookies.org. Some web browsers provide settings that allow a user to reject cookies or to alert a user when a cookie is placed on the user’s computer, tablet or mobile device.
Most mobile devices also offer settings to reject mobile device identifiers. Although users are not required to accept cookies or mobile device identifiers, blocking or rejecting them may prevent access to some features available through the Site.
How We Use that Information
Your information may be used for various purposes, including to:
- Contact you about upcoming events, fundraisers, volunteer opportunities and other UMDF activities;
- For research purposes;
- Compile and maintain our internal records;
- Comply with applicable government reporting requirements;
- Distribute receipts and other correspondences related to your donations;
- To operate, improve and personalize the services we offer through the Site;
- To provide the Site to you and further improve and optimize our online services and operations
- Respond to inquiries and other requests submitted via the website; and
- To otherwise communicate with you.
Please note that we do not publish, sell, trade, or rent your information and will never send out mailings on behalf of other organizations unrelated to UMDF business and activities.
Sharing of Information
We may share certain information collected about you with third parties as follows:
- With Third Party Service Providers Performing Services on Our Behalf. We share your personal information with our service providers to perform the functions for which we engage them. For example, we may use third parties to host the Site or assist us in providing functionality on the Site, provide data analysis and research on the Site and to process payments. For more information about our third-party donation platform that manages the payment processing and any other related third parties for payments, please see the section entitled “Donation Platform” below.
- For Legal Purposes. We also may share information that we collect from users as needed to enforce our rights, protect our property or protect the rights, property or safety of others, or as needed to support external auditing, compliance and corporate governance functions. We will disclose personal information as we deem necessary to respond to a subpoena, regulation, binding order of a data protection agency, legal process, governmental request or other legal or regulatory process. We may also share personal information as required to pursue available remedies or limit damages we may sustain.
- Changes of Control. We may transfer information, including your personal information, in connection with a change of ownership or control by or of us or any affiliated entity (in each case whether in whole or in part).
It is our internal policy to limit access to your donation information to our professional staff and volunteers who need to process that information for the purposes described above. Your personal donation information is never sold to or traded with other parties.
We implement reasonable security measures designed to prevent unauthorized access, alteration, disclosure, destruction or misuse of personal information. Among other things, we undertake a range of security practices, including measures to help secure web access to sensitive data and undertake efforts to address security vulnerabilities for various tools and databases. Nevertheless, unless otherwise required by applicable law, we will not be responsible for loss, corruption or unauthorized acquisition or misuse of personal information that you provide through the Site that is stored by us, or for any damages resulting from such loss, corruption or unauthorized acquisition or misuse.
We seek to retain user-related information only as needed to fulfill the purposes described in this policy unless a longer retention period is required by law or regulations. For example, tax laws in the United States may require the Foundation to keep contact information and contribution level of donors on file.
The Site includes links to other websites maintained by third parties (e.g., LinkedIn, Classy Inc. and Facebook). The UMDF is not responsible for the content or data collection activities that take place on these third-party sites. Please reference the privacy policies provided on these third-party sites for information about how they process your data.
Do Not Track
Our Site does not currently take any action when it receives a Do Not Track request. Do Not Track is a privacy preference that you can set in your web browser to indicate that you do not want certain information about your webpage visits collected across websites when you have not interacted with that service on the page. For details, including how to turn on Do Not Track, visit www.donottrack.us.
We do not knowingly collect or maintain personal information from any person under the age of thirteen. No parts of our Site are directed to or designed to attract anyone under the age of thirteen.
United Mitochondrial Disease Foundation
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239 USA
Approved by Board of Trustees: September 7, 2021