Privacy Policy

Minutes Matter - MCADD (“Minutes Matter,” “we,” “our,” or “us”) respects your privacy and is committed to protecting the personal information of individuals who visit our website, communicate with us, subscribe to our communications, or otherwise interact with our organization. This Privacy Policy explains how we collect, use, disclose, safeguard, and process personal information through our website and related services.

By accessing or using our website, you acknowledge that you have read and understood this Privacy Policy.

Who We Are

Minutes Matter - MCADD is a nonprofit organization dedicated to supporting individuals and families affected by Medium-Chain Acyl-CoA Dehydrogenase Deficiency (“MCADD”) and advocating for timely newborn screening, education, awareness, and research initiatives.

Our website is located at www.MinutesMatter-MCADD.org.

You may contact us at:

Minutes Matter - MCADD
PO Box 281
Wilkesboro, NC 28697
United States

Email: Beth@MinutesMatter-MCADD.org

Information We Collect

We may collect personal information that you voluntarily provide to us when you submit forms, subscribe to communications, contact us, or otherwise interact with our website. Such information may include your name, email address, mailing address, telephone number, and any information you choose to provide in communications or form submissions.

In the future, if donation functionality is enabled on our website, we may also collect donation-related information through secure third-party payment processors. We do not store full payment card information on our own servers.

In addition to information you voluntarily provide, we may automatically collect certain technical and usage information when you access or use our website. This information may include your IP address, browser type, browser version, device type, operating system, pages viewed, dates and times of access, referring URLs, and general website interaction data.

We may also collect information through cookies and similar technologies used to improve website functionality, analyze website traffic, understand user engagement, maintain security, and support future outreach and advertising efforts.

Cookies and Tracking Technologies

Our website may use cookies, pixels, web beacons, and similar tracking technologies to enhance user experience and improve website performance. Cookies are small data files stored on your device that help websites function efficiently and provide analytical information.

We may use both essential and non-essential cookies. Essential cookies are necessary for website operation and security. Non-essential cookies may include analytics, performance, functionality, and advertising cookies.

Planned third-party services may include Google Analytics and Meta Pixel. These tools may collect information regarding website usage, browsing behavior, device information, and interactions with our website.

Where required by applicable law, including the European Union General Data Protection Regulation (“GDPR”), we will obtain appropriate consent before placing non-essential cookies on a user’s device.

Users may manage or disable cookies through their browser settings; however, certain portions of the website may not function properly if cookies are disabled.

Legal Bases for Processing Personal Information

Where the GDPR applies, we process personal information pursuant to one or more lawful bases, including an individual’s consent, our legitimate interests in operating and improving our website and services, compliance with legal obligations, and, where applicable, contractual necessity related to donation processing or other requested services.

How We Use Information

We may use personal information to respond to inquiries, provide requested information, send communications and newsletters to individuals who have opted to receive them, improve website functionality and user experience, maintain organizational records, support future donation processing, analyze website performance and engagement, protect website security, prevent fraud or misuse, and comply with applicable legal obligations.

We do not sell, rent, or trade personal information to third parties.

Email Communications

Individuals who subscribe to our mailing list or otherwise opt in to receive communications from us may receive newsletters, updates, announcements, fundraising communications, or other information related to Minutes Matter - MCADD and its mission.

Recipients may unsubscribe from marketing or informational emails at any time by using the unsubscribe link included in the communication or by contacting us directly. We strive to comply with all applicable email marketing laws, including the CAN-SPAM Act.

Disclosure of Information

We may share personal information with trusted third-party service providers who assist us in operating our website, managing communications, analyzing website traffic, processing donations, maintaining website security, or supporting organizational operations. Such providers may include website hosting services, email marketing platforms, analytics providers, advertising platforms, and payment processors.

Third-party providers are authorized to use personal information only as necessary to provide services on our behalf and are expected to maintain appropriate safeguards for such information.

We may also disclose personal information if required to do so by law, legal process, governmental request, court order, or to protect the rights, safety, property, or security of Minutes Matter - MCADD, our users, or others.

International Data Transfers

Our website and service providers may operate in the United States and other countries. As a result, personal information may be transferred to, stored in, or processed in jurisdictions outside a user’s country of residence.

Where required by applicable law, including the GDPR, we rely on appropriate safeguards for international data transfers, including the use of GDPR-compliant service providers and, where appropriate, Standard Contractual Clauses approved by the European Commission.

Data Retention

We retain personal information only for as long as reasonably necessary to fulfill the purposes described in this Privacy Policy, comply with legal obligations, resolve disputes, enforce agreements, maintain appropriate records, or otherwise support legitimate organizational operations.

Email subscriber information may be retained until an individual unsubscribes or requests deletion. Analytics information may be retained in accordance with applicable analytics platform settings and legitimate business needs. Donation records, once donation functionality is enabled, may be retained as required by law, including nonprofit, accounting, and tax recordkeeping obligations.

Data Security

Minutes Matter - MCADD implements reasonable administrative, technical, and physical safeguards designed to protect personal information from unauthorized access, disclosure, alteration, misuse, or destruction.

Security measures may include secure hosting, SSL encryption, restricted access to personal information, vendor due diligence, and the use of reputable third-party service providers.

While we strive to protect personal information using commercially reasonable measures, no method of internet transmission or electronic storage is completely secure, and we cannot guarantee absolute security.

Data Breach Notification

In the event of a data breach involving personal information, Minutes Matter - MCADD will comply with applicable federal and state laws, including the North Carolina Identity Theft Protection Act, regarding investigation, mitigation, and notification obligations.

Where required by law, affected individuals and applicable governmental authorities will be notified without unreasonable delay.

Your Privacy Rights

Depending on your jurisdiction, including if you reside in the European Economic Area (“EEA”), United Kingdom, or certain U.S. states, you may have rights regarding your personal information. Such rights may include the right to request access to personal information, request correction of inaccurate information, request deletion of personal information, object to or restrict certain processing activities, request data portability, and withdraw consent where processing is based on consent.

Requests regarding personal information may be submitted to Beth@MinutesMatter-MCADD.org. We reserve the right to verify identity before responding to requests and will respond in accordance with applicable law.

Individuals located in the EEA also have the right to lodge a complaint with an applicable supervisory authority.

Children’s Privacy

Our website is not directed to children under the age of thirteen (13), and we do not knowingly collect personal information from children without verifiable parental consent. If we become aware that personal information has been collected from a child in violation of applicable law, we will take reasonable steps to delete such information.

Third-Party Websites

Our website may contain links to third-party websites or services that are not operated or controlled by Minutes Matter - MCADD. We are not responsible for the privacy practices, policies, content, or security of third-party websites. Users should review the privacy policies of any third-party websites they access.

Future Donation Processing

If online donation functionality is enabled in the future, donations will be processed through secure third-party payment processors. Additional terms, disclosures, and payment-related information may be provided at the time donations are made.

Minutes Matter - MCADD does not store full payment card information on its own servers.

Changes to This Privacy Policy

We reserve the right to modify or update this Privacy Policy at any time. Any changes will become effective upon posting to this website unless otherwise stated. The “Last Updated” date at the top of this Privacy Policy reflects the date of the most recent revision.

Continued use of the website following the posting of changes constitutes acceptance of the revised Privacy Policy.

Contact Information

Minutes Matter - MCADD
PO Box 281
Wilkesboro, NC 28697