Privacy Policy

Privacy Policy

United Mitochondrial Disease Foundation Online Privacy Policy


Effective Date: September 7, 2021


The United Mitochondrial Disease Foundation (“UMDF,” “we”, “us” or “our”) recognizes the importance of protecting the privacy of our online visitors. It is our intent to balance our legitimate interest in collecting and using information received from you and about you with your reasonable expectation of privacy. This privacy policy (“Privacy Policy”) applies to all information that may be collected or otherwise provided by you to UMDF and its service providers from your visit to our website available at (the “Site”).


PLEASE REVIEW THIS PRIVACY POLICY CAREFULLY. When you submit information to or through the Site, you consent to the collection and processing of your information as described in this Privacy Policy. By using the Site, you accept the terms of this Privacy Policy.


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.


  1. 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.


  1. 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.


  1. 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.


Why do we use them? Cookies help us improve the Site by providing us with information about which parts of the Site are most popular, enabling us to analyze technical and navigational information about the Site and helping us detect and prevent fraud. We also use cookies and other data collection tools (such as web beacons and server logs) to help improve your experience with the Site.


For example, we use Google Analytics to help analyze how users use the Site. These tools use cookies to collect standard Internet log information and visitor behavior information in an anonymous form. The information generated by the cookie about your use of the Site (including IP address) is transmitted to our data collection tool service providers. This information is then used by us to evaluate visitors’ use of the Site and to compile statistical reports on website activity for UMDF. If you would like to opt-out from the use of your information by Google analytics, you may use Google’s analytics opt-out browser add-on designed for this purpose.

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 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).


Donation Platform

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 partner with Classy Inc. (“Classy”), a third-party giving platform, to provide you with the ability to make online donations or set up funds for others to donate. As such, you may provide Classy and/or its service providers with payment data, including credit card numbers or other financial information. Classy may transfer information related to your donations to UMDF (including the donation amount, your name, billing address, email address, etc.); however, credit/debit card data, bank account numbers and other sensitive financial information is not shared. Any access to and use of Classy’s services are not governed by this Privacy Policy, but is instead governed by the online policies of Classy and we are not responsible for the information practices of Classy. The privacy policy for Classy Inc. can be reviewed via this link.



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 may change the Privacy Policy from time to time. Any and all changes will be posted to this page so users are always aware of the information we collect and how it is used. Substantive changes may also be announced through the standard mechanisms by which we communicate with our users and community. You should periodically check this page for any changes to the current policy. The latest version will be reflected through an updated Effective Date at the top of this Privacy Policy.


Data Retention

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.


Third-Party Websites

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



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.


Contact Us

If you have questions about this Privacy Policy or the status and accuracy of your data, please email or write to:


United Mitochondrial Disease Foundation

8085 Saltsburg Road, Suite 201

Pittsburgh, PA 15239 USA


Approved by Board of Trustees: September 7, 2021