Privacy Policy

Plasminogen Deficiency Foundation Privacy Policy

Effective Date: October 6, 2026

The Plasminogen Deficiency Foundation (“PLGD Foundation,” “we,” “us,” or “our”) respects your privacy and is committed to protecting the personal information entrusted to us.

This Privacy Policy explains how we collect, use, disclose, retain, and protect personal information when you visit or use our website, plasminogendeficiency.org (the “Website”), communicate with us, participate in our programs or online community, submit information to us, or make a donation.

This Privacy Policy also describes certain rights available to individuals under applicable privacy laws, including the European Union General Data Protection Regulation (“GDPR”), where applicable.

By using the Website, you acknowledge that you have read and understood this Privacy Policy. Where applicable law requires your consent to a particular use of your information, we will obtain that consent separately.

1. About the Plasminogen Deficiency Foundation

The Plasminogen Deficiency Foundation is a U.S.-based nonprofit organization dedicated to supporting individuals and families affected by plasminogen deficiency, increasing awareness and education, supporting the patient community, and advancing research and access to information and resources.

For purposes of applicable data protection laws, the PLGD Foundation generally acts as the data controller for personal information that we collect and determine how to use through our Website and our programs.

2. Information We Collect

We collect information that you voluntarily provide to us, information generated through your use of our Website, and information provided to us through third-party services that support our activities.

You may browse much of our Website without providing personal information.

The types of information we collect include the following.

A. Newsletter and Mailing List Information

You may subscribe to the PLGD Foundation’s newsletter or mailing list through:

a signup form in the Website footer; or
a pop-up signup form.

When you subscribe, we may collect information such as your name and email address and other information you voluntarily provide through the signup form.

Newsletter and mailing-list information is transmitted to and stored in our Mailchimp account. We use this information to send newsletters, educational information, Foundation updates, event information, advocacy communications, fundraising communications, and other communications that may be relevant to our mission and community.

You may unsubscribe from non-essential email communications at any time by using the unsubscribe mechanism included in our emails or by contacting us.

B. Contact Us Forms

Our Website provides a Contact Us form through which you may contact the PLGD Foundation.

Information submitted through this form may include your name, email address, contact information, the subject of your inquiry, and any other information you choose to include in your message.

Information submitted through the Contact Us form is transmitted to the Foundation’s email account and is also stored through Gravity Forms on our WordPress Website.

We use this information to respond to your inquiry, provide requested information or assistance, communicate with you regarding Foundation activities, and otherwise respond to your request.

Please do not submit highly sensitive information through a general Contact Us form unless it is specifically requested or necessary for your inquiry.

C. Referral Requests

Our Website provides a form through which individuals may request a referral or assistance from the PLGD Foundation.

Information submitted through this form may include contact information and information that you voluntarily provide regarding your circumstances or the reason for your request.

Referral-request information is transmitted to the Foundation’s email account and stored through Gravity Forms on our WordPress Website.

We use this information to respond to your request and provide appropriate information, resources, referrals, or assistance.

Because information relating to a rare disease may constitute health information or other sensitive personal information, we ask that you provide only the information reasonably necessary for us to respond to your request.

D. Geographic Map

The Website may provide an interactive map that allows individuals to voluntarily submit their geographic location for display on the Website.

Participation in this feature is completely voluntary.

If you choose to participate, the geographic location you submit may be displayed publicly on the Website. We do not intentionally publish other identifying information about you through this map feature beyond the geographic location you choose to provide.

Because a geographic location may potentially allow someone to infer where an individual lives, you should carefully consider how precise a location you choose to submit.

You may choose not to participate in this feature without affecting your ability to use the remainder of the Website or Foundation services.

E. Patient Stories and Photographs

The PLGD Foundation may invite patients, families, caregivers, clinicians, or other members of the community to submit personal stories, photographs, or other materials for possible publication on the Website or in Foundation communications.

We will seek appropriate consent or permission before publishing an individual’s story, photograph, or other personally identifiable material.

The information submitted may include a person’s name, photograph, story, geographic information, relationship to plasminogen deficiency, and other information voluntarily provided by the individual.

Because stories concerning plasminogen deficiency may contain health information or other sensitive personal information, we will take additional care with information that may identify an individual as having or being affected by plasminogen deficiency.

Consent documentation may be retained by the Foundation for purposes of demonstrating the permission that was provided and managing the publication of the submitted material.

If you previously gave us permission to publish your story or photograph and would like to discuss withdrawing or changing that permission, please contact us.

F. Donations

Donations to the PLGD Foundation may be processed through Givebutter, a third-party donation and fundraising platform.

When you make a donation, Givebutter may collect information necessary to process and administer your donation, including contact, demographic, and payment or financial information.

Payment card and other financial information provided for a donation is processed through the applicable payment-processing systems. The PLGD Foundation does not need to receive or store your complete payment-card information in order to process a donation.

We may receive information from Givebutter regarding your donation, such as your name, contact information, donation amount, donation date, and other information associated with the donation.

We use donation information to:

process and acknowledge donations;
issue donation receipts;
maintain appropriate financial and tax records;
communicate with donors regarding their donations;
administer fundraising activities;
recognize donors where appropriate and permitted; and
support the Foundation’s charitable mission.

Givebutter’s own privacy practices also apply to information that Givebutter collects directly through its platform.

G. Patient Portal / Online Community

The PLGD Foundation may provide an online patient and community portal through Fluent Community, which operates through our WordPress Website.

If you create an account or participate in the online community, we may collect information associated with your account and your participation in the community.

Information you post or otherwise make available within the community may be visible to other registered community members depending on the functionality and privacy settings of the platform.

You should exercise care when deciding what information to post in a community environment. In particular, we recommend that you do not publicly post information that you would not want other community members to see.

You may delete your community information or account in accordance with the functionality available through the platform. Certain information may nevertheless need to be retained where required for legal, security, administrative, or other legitimate purposes.

3. Information Collected Automatically

When you visit our Website, certain information may be collected automatically through cookies, analytics technologies, server logs, and similar technologies.

Depending on the technology used and your choices, this information may include:

IP address;
browser type and version;
operating system;
device type;
approximate geographic location;
pages viewed;
links clicked;
date and time of visits;
referring website;
length of time spent on pages;
information about how you interact with the Website; and
other technical or usage information.

We use this information to operate, maintain, secure, analyze, and improve the Website.

Where required by applicable law, we obtain consent before using non-essential cookies or similar technologies.

4. Cookies and Similar Technologies

A cookie is a small text file that a website places on your device. Cookies and similar technologies may allow a website to recognize a browser, remember preferences, maintain functionality, and understand how visitors use a website.

Our Website may use the following categories of cookies and similar technologies:

Strictly Necessary Cookies

These cookies may be necessary for the Website to function properly, provide security, remember certain settings, or provide functionality that you have requested.

Because these technologies may be necessary for the operation of the Website, they may not require consent under applicable law. We will nevertheless provide information about them as appropriate.

Analytics Cookies

We may use Google Analytics to understand how visitors use our Website.

Google Analytics may collect information such as pages viewed, approximate geographic information, device and browser information, how visitors arrived at the Website, and interactions with the Website.

We use analytics information primarily to understand Website traffic and engagement, identify areas for improvement, evaluate the effectiveness of our educational and outreach efforts, and improve the Website.

Analytics cookies are not strictly necessary to provide the Website. Where applicable law requires consent, we will obtain your consent before activating Google Analytics cookies or similar non-essential tracking technologies. This approach is consistent with guidance stating that analytics cookies are not exempt from consent requirements merely because they are used for analytics.

Google provides tools that allow websites to communicate users’ consent choices to Google Analytics, including Google’s Consent Mode.

Your Cookie Choices

Where required, our Website will provide a cookie-consent mechanism allowing you to:

accept optional cookies;
decline optional cookies;
select particular categories of optional cookies; and
change or withdraw your consent later.

You may also control cookies through your browser settings. Disabling certain cookies may affect the functionality of portions of the Website.

A privacy policy alone does not constitute consent to non-essential cookies where applicable law requires affirmative consent.

5. How We Use Personal Information

We may use personal information for the following purposes:

To provide services and respond to requests, including responding to contact and referral requests.
To communicate with you, including sending newsletters, educational information, Foundation updates, event information, advocacy communications, and fundraising communications where permitted.
To administer donations and fundraising activities, including processing, acknowledging, and recording donations.
To operate our online community and patient resources.
To publish stories, photographs, and other community content when we have obtained appropriate permission.
To operate and improve our Website, including understanding Website usage and resolving technical problems.
To support our charitable mission, including education, awareness, patient support, community engagement, advocacy, and other Foundation activities.
To protect the security and integrity of the Website and our systems.
To comply with legal, regulatory, accounting, tax, and reporting obligations.
To establish, exercise, or defend legal claims or rights.
For other purposes that you authorize or that are disclosed to you when information is collected.

We seek to collect and use only information that is reasonably necessary for the purposes described in this Privacy Policy.

6. Legal Bases for Processing Under the GDPR

If the GDPR applies to the processing of your personal information, we will process personal information only when we have an applicable legal basis.

Depending on the circumstances, our legal bases may include:

Consent

We may rely on your consent when you voluntarily provide information for a particular purpose, such as subscribing to certain communications, submitting a story or photograph for publication, participating in certain optional features, or consenting to non-essential cookies.

You may withdraw consent at any time. Withdrawal does not affect the lawfulness of processing that occurred before withdrawal.

Legitimate Interests

We may process information when necessary for our legitimate interests, provided those interests are not overridden by your rights and interests.

Our legitimate interests may include operating and improving the Website, communicating with our community, administering our programs, maintaining Website security, preventing fraud or misuse, and advancing our charitable mission.

Legal Obligations

We may process personal information when necessary to comply with a legal or regulatory obligation, including tax, accounting, financial, or other legal requirements.

Performance of a Contract or Requested Service

Where applicable, we may process information when necessary to provide a service or fulfill a request you have made, such as administering an account or processing a transaction.

Protection of Vital Interests

Where applicable, we may process information when necessary to protect someone’s vital interests.

Where personal information constitutes a special category of personal data under the GDPR, such as health information, we will rely on an applicable additional legal condition required by the GDPR, including explicit consent where appropriate.

7. Sensitive and Health-Related Information

Because the PLGD Foundation serves a rare-disease community, some information provided to us may reveal that an individual has, is affected by, or has a relationship to someone with plasminogen deficiency.

Under the GDPR, information concerning health is considered a special category of personal data and receives additional protection.

We therefore encourage individuals to provide only information that is reasonably necessary for the particular purpose for which they are communicating with us.

Unless specifically requested through an appropriate process, please do not send medical records, detailed medical histories, genetic information, or other highly sensitive information through ordinary email, the general Contact Us form, or other public areas of the Website.

Where we intentionally collect health-related or other specially protected information, we will process it in accordance with applicable law and the purpose for which it was collected.

The PLGD Foundation is not a health care provider and this Privacy Policy does not create a patient-provider relationship.

8. Information You Make Public

Certain features of the Website may allow you to voluntarily share information publicly or with other community members, including:

patient stories;
photographs;
geographic information submitted through the map;
information posted within the patient/community portal; and
other content you voluntarily submit for publication.

Once information has been made publicly available, it may be viewed, copied, saved, or redistributed by others.

Please carefully consider the information you choose to make public.

9. How We Share Personal Information

We do not sell your personal information.

We may share personal information in the following circumstances:

Service Providers

We may share information with third-party service providers that provide services on our behalf, including providers that support:

email communications and mailing lists, such as Mailchimp;
Website forms and hosting, including WordPress and Gravity Forms;
online community functionality, including Fluent Community;
donations and fundraising, including Givebutter;
Website analytics, including Google Analytics; and
Website security, maintenance, technology, and other administrative functions.

These providers may process information according to their own privacy policies and our instructions or contractual arrangements, as applicable.

Legal Requirements

We may disclose information when required by law, regulation, court order, subpoena, or other valid legal process.

Protection of Rights and Safety

We may disclose information when we reasonably believe it is necessary to protect the rights, property, safety, or security of the PLGD Foundation, our community, our Website, or another person.

Organizational Transactions

If the PLGD Foundation undergoes a reorganization, merger, transfer of assets, dissolution, or similar transaction, personal information may be transferred as part of that transaction, subject to applicable law.

With Your Direction or Consent

We may share information when you specifically direct us to do so or otherwise consent to the disclosure.

10. Third-Party Websites and Services

Our Website may contain links to websites or services operated by third parties.

Examples may include donation platforms, social media websites, medical or educational resources, partner organizations, and other external websites.

This Privacy Policy applies only to information collected by the PLGD Foundation through our Website and activities covered by this Policy.

We do not control the privacy practices of third-party websites or services. When you leave our Website, we encourage you to review the privacy policy of the third party before providing personal information.

Third-party services that operate features embedded in or linked from our Website may collect information directly from you according to their own privacy policies.

11. International Data Transfers

The PLGD Foundation is based in the United States, and some of our service providers may be located in the United States or other countries.

If you are located in the European Economic Area (“EEA”), the United Kingdom, Switzerland, or another jurisdiction that restricts international transfers of personal information, your information may be transferred to and processed in countries that may not provide the same level of data protection as your home jurisdiction.

Where required by applicable law, we will use an appropriate legal mechanism for international data transfers, such as an adequacy decision, Standard Contractual Clauses, or another lawful transfer mechanism.

12. Data Retention

We retain personal information only for as long as reasonably necessary to fulfill the purposes for which it was collected, to administer our programs, maintain appropriate organizational and financial records, comply with legal and regulatory obligations, resolve disputes, enforce agreements, and protect our rights.

Different categories of information may be retained for different periods.

For example:

donation and financial records may be retained as required for tax, accounting, and legal purposes;
newsletter information may be retained while you remain subscribed or as otherwise necessary for legitimate administrative purposes;
consent records may be retained for as long as reasonably necessary to document the consent provided;
Website and security information may be retained for an appropriate technical or security period; and
information submitted for publication may be retained for as long as necessary to administer the publication and associated consent.

When personal information is no longer reasonably necessary, we will seek to delete it, securely destroy it, or anonymize it, subject to applicable legal and operational requirements.

13. Data Security

We take reasonable administrative, technical, and organizational measures designed to protect personal information against unauthorized access, loss, misuse, alteration, or disclosure.

These measures may include access controls, password protection, secure transmission technologies, limiting access to personal information to individuals who need it for legitimate purposes, and using reputable third-party service providers.

However, no method of transmitting or storing information electronically can be guaranteed to be completely secure.

If you have reason to believe that your interaction with us or your information is no longer secure, please contact us promptly.

14. Your Rights Under the GDPR

If the GDPR applies to you, you may have the following rights, subject to applicable legal limitations:

Right to Be Informed

You have the right to receive clear information about how your personal information is collected and used.

Right of Access

You may request confirmation as to whether we process personal information about you and request a copy of that information.

Right to Rectification

You may ask us to correct inaccurate or incomplete personal information.

Right to Erasure

In certain circumstances, you may request that we delete your personal information.

Right to Restriction of Processing

In certain circumstances, you may request that we restrict how we process your personal information.

Right to Data Portability

Where applicable, you may request that certain personal information you provided to us be provided in a structured, commonly used, machine-readable format.

Right to Object

You may have the right to object to certain processing, including processing based on legitimate interests and, in certain circumstances, direct marketing.

Right to Withdraw Consent

Where processing is based on your consent, you may withdraw your consent at any time. Withdrawal does not affect the lawfulness of processing that occurred before withdrawal.

These rights are consistent with the rights described by the European Commission under the GDPR.

To exercise any of these rights, please contact us using the information in the Contact Us section below.

We may need to request information reasonably necessary to verify your identity before fulfilling certain requests.

Under the GDPR, organizations generally must respond to rights requests without undue delay and, in principle, within one month.

15. Right to Lodge a Complaint

If you are located in the EEA and believe that we have not handled your personal information appropriately, you have the right to lodge a complaint with the data protection supervisory authority in the country where you live, work, or where you believe an infringement occurred.

You may also contact us directly so that we can attempt to address your concern.

16. Children’s Privacy

The PLGD Foundation’s Website may provide educational and community resources relevant to children and families affected by plasminogen deficiency.

We do not knowingly use children’s personal information for purposes unrelated to the services or activities for which the information was provided.

Because some of our community members may be minors, parents or legal guardians should carefully consider what information they or their children submit to the Website, particularly information that may reveal a child’s identity, location, health information, school, or other sensitive information.

Where applicable law requires parental or guardian consent for the collection or processing of a child’s personal information, we will seek that consent.

Parents or legal guardians who believe that a child has provided personal information to us and would like the information reviewed or deleted may contact us.

17. Donor Privacy

The PLGD Foundation values the generosity of our donors.

We do not sell, rent, or trade donor personal information.

We use donor information to administer donations, maintain financial and tax records, acknowledge and communicate with donors, conduct fundraising and stewardship activities, and support the Foundation’s charitable mission.

Where a donor chooses to remain anonymous, we will respect that request to the extent reasonably practicable.

Donations processed through third-party platforms, including Givebutter, are also subject to the privacy practices of those platforms.

18. Email Communications

If you subscribe to our newsletter or otherwise opt in to receive non-essential communications, we may send you information regarding:

Foundation programs;
educational resources;
patient and family resources;
events;
advocacy activities;
fundraising;
research and awareness activities; and
other information relating to the Foundation’s mission.

You may unsubscribe from marketing or informational emails at any time using the unsubscribe link contained in the email.

Even if you opt out of non-essential communications, we may continue to send communications that are necessary to administer a transaction, respond to a request, provide important information about a service you use, or comply with legal obligations.

19. Changes to This Privacy Policy

We may update this Privacy Policy periodically to reflect changes in our practices, technology, legal requirements, or services.

When we make changes, we will update the “Effective Date” at the beginning of this Policy.

If we make material changes that significantly affect how we use personal information, we may provide additional notice or obtain consent where required by applicable law.

We encourage you to review this Privacy Policy periodically.

20. Contact Us

If you have questions about this Privacy Policy, our privacy practices, or your personal information, or if you wish to exercise applicable privacy rights, please contact:

Plasminogen Deficiency Foundation
Attn: Privacy
203 Park Bluff Dr N, Chapel Hill, NC 27517
United States

Email: contact@plgd.org

Website: plasminogendeficiency.org

When submitting a privacy request, please identify the nature of your request and provide enough information for us to understand and respond to it. We may request reasonable information to verify your identity before processing certain requests.

Last Updated: October 6, 2026