PHA collects personal information you choose to share with us when you engage with our organization. This includes information provided through our website, membership sign-up, registration forms, mobile apps, surveys, community forums or other services. Information we collect may include:

• Personal information: When you sign up for membership, register for tools and services, subscribe to communications, or participate in events, you may provide information such as:
  • • Name.
    • Mailing address.
    • Email address.
  • Phone number.
  • Date of birth or age.
  • Gender.
  • Username.
  • Device information.
  • Education and professional certifications.
  • Other personal details you voluntarily share.
• Sensitive Information: With your consent, we may collect sensitive data to better understand and serve our community. This may include:
  • Race or ethnicity.
  • Health information related to pulmonary hypertension.
  • Sexual orientation.
  • Children’s information.
• Payment information: If you become a member, register for an event or donate; we may collect payment and identity verification information. This may include your contact information and payment method. If you pay by credit card, we and our third-party processor may collect your credit card number and expiration date to securely process the transaction.
• Marketing and feedback: We may collect information you provide during:
  • Surveys and testimonials.
  • Promotions and campaigns.
  • Webinars, conferences and community events.
  • Feedback sessions or focus groups.
• Offline information: We may collect information you provide in person. For example: recordings or photos from live events.
• Business and vendor interactions: If you work with PHA as a vendor, service provider or contractor, we may collect:
  • Business contact information for you and/or your employees.
  • Other information shared while providing services or fulfilling contractual agreements.

We collect information about your browser, device and interactions with PHA’s website. This data helps us improve the functionality, performance, user experience, analytics and effectiveness of our programs and outreach. Automatically collected data may be combined with other information you provide.

• IP address
  • PHA may use the IP address of all site visitors to assist us in diagnosing problems with our server, analyzing user trends and traffic patterns, tracking user movement, improving web site design and layout, and administering the web site. Your IP address is a number automatically assigned to your computer when you use the Internet and cannot be linked to personally identifiable information. Accordingly, the information obtained from your IP address may be used only as aggregated and anonymous data, and we will never know who you are unless you specifically tell us.
• Other device and technical information: We may collect information about the computer or mobile device you use to access our services, including:
  • IP address.
  • Hardware model.
  • Operating system version.
  • Browser type and settings.
  • Mobile network information.
  • Language and time zone settings.
  • General location or geolocation data.
  • Other technical identifiers.
• User interaction and site activity: We may log information about your interactions with our services, such as:
  • Pages viewed and features accessed.
  • Date, time and duration of visit.
  • The referring website or link.
  • Navigation patterns within our site.
  • Whether you have started or completed a registration, form or donation.
  • Downloads or actions taken on specific pages.
• Email and link engagement: If you receive emails from PHA, we may collect data such as:
  • Whether you opened the email
  • Which links you clicked
  • Whether the message was delivered or bounced

We may also track how you interact with links from PHA across third-party platforms or communications.

• Cookies and similar technologies: PHA and our service providers use cookies, pixel tags and other tracking tools to:
  • Save user preferences.
  • Analyze traffic and usage patterns.
  • Personalize your website experience.
  • Deliver more relevant outreach and advertising.

You can manage cookie preferences in your browser settings; however, please note that disabling cookies may impact some site features. For more, see the Cookies and tracking technologies section.

We may also collect information about you from additional online or offline sources. This includes:

• • Social media platforms.
  • Partner organizations.

We may combine this information with the personal information you’ve provided to help improve our outreach, services and communications.

The following table provides an overview of the categories of data PHA may collect, consistent with privacy regulations such as the CCPA and GDPR.

PHA uses the information we collect in various ways to support our mission and serve our community. This includes:

• Processing donations and membership transactions
• Verifying your identity (such as when accessing your account or member profile)
• Preventing fraud and enhancing security
• Providing the services and content you request
• Responding to your questions, requests and messages
• Managing your communication preferences
• Performing analytics to understand how you use our website, emails and content
• Delivering personalized content, fundraising messages and outreach
• Evaluating and improving our programs, services and outreach
• Supporting the diversity of our volunteers and ensuring that our boards and committees reflect the communities we serve
• Complying with legal requirements and organizational policies
• Helping you understand your personal health information when appropriate
• Fulfilling any contractual obligations
• For any other purpose we disclose at the time you provide your information

We may also use aggregate or anonymized data (that does not identify individuals) to evaluate trends, improve our services or support research.

• Site registration: Information provided during site registration is only used to provide you with targeted content and allows you to access specific features, such as updating your contact information.
• Profile updates and directories: Profile updates to your contact information will only be used for internal purposes unless you have opted into a directory. We will only make your information available in a directory if you have opted in. When opting in to a directory, please take special note of what information will be made available in the directory and to whom. Examples include:
  • Find a Doctor directory, which is public facing.
  • PH Professional Network (formerly PH Resource Network) Member Directory, which is available to current PHPN members only.
• Surveys: Occasionally, we may invite you to participate in online surveys. These surveys help us improve our programs and better serve the PH community. Participation is voluntary, and any personal information you share will not be disclosed to third parties without your consent. Responses may be used to compile anonymous reports or determine eligibility for programs or events.
• Voluntary submissions: If you share a personal story or agree to be featured in a PHA article, we will always obtain your consent before publishing your name or story. We may contact you about opportunities to participate in media, education, or awareness campaigns. We may contact you about opportunities to participate in media, education, or awareness campaigns.

We do not sell personal information. We share data only as needed to operate our services and fulfill the purposes described in this policy.

When we share data, it is limited to trusted service providers and partners who process information on our behalf under written agreements that include confidentiality, security and data-use restrictions. These providers are required to use the data only for the services they perform for PHA and to delete or return the information once their work is complete. Categories of service providers and processors may include:

• Payment processors: To securely process your donations or membership payments, we share necessary transaction information with trusted credit card processing companies.
• Service providers: We may share information with companies or consultants that provide services on our behalf, such as:
  • Web hosting and IT support.
  • Email distribution and direct mail (e.g., Mailchimp, which we use to send newsletters and other communications).
  • Professional advisors.
  • Event management.
  • Payment processing.
  • Data analytics and market research.
  • Advertising platforms (Learn more in the Cookies and tracking technologies section).

These providers are permitted to use your information only to perform contracted services for PHA and may not use it for their own purposes.

• Partner organizations: We may share limited information with research collaborators, awareness campaign partners, or nonprofits we work with to co-host events, administer programs or advance PH-related initiatives.
• Compliance and legal obligations: We may disclose your information to comply with applicable laws and regulations, including court orders, subpoenas or law enforcement requests. We may also share information to:
  • Enforce our terms of use or other policies.
  • Address suspected fraud or security concerns.
  • Respond to emergencies.
  • Protect the safety, rights or property of PHA or others.

PHA does not sell your personal information. We permit access to personal data only to third-party service providers who perform essential functions on our behalf. These vendors are contractually required to protect your information, use it solely for the services they provide to PHA, and maintain its confidentiality.

We may disclose limited, non-identifiable data—such as zip code, age or gender, in aggregate form, to support research, outreach or reporting. In certain cases, and only with your explicit consent (e.g., through an opt-in form), PHA may offer you third-party services or information tailored to your preferences.

PHA also reserves the right to revoke access to services or terminate user accounts if it learns that false or misleading registration information was submitted.

PHA occasionally sends promotional or engagement emails on behalf of third parties, including PH Care Centers, pharmaceutical companies, researchers or other partners. These messages may include:

• Invitations to participate in surveys or research studies.
• Announcements about relevant educational or product offerings.
• Opportunities to learn about clinical trials or programs related to PH.

These emails are sent by PHA directly and are targeted based on limited criteria, such as general interest or program engagement. We do not sell or share your personal information (such as your name, email or medical history) with these third parties.

You can opt out of receiving these types of communications at any time by clicking the unsubscribe link in the engagement email or by updating your communication preferences in your PHA account.

We use cookies and similar technologies on our website to provide better user experience, analyze website traffic and support our advertising efforts. Cookies are small files stored on your device that help us understand how visitors use our site and allow us to serve more relevant content and ads.

We use a consent management platform (CookieYes) to present cookie choices before setting non-essential cookies (e.g., analytics or advertising) in jurisdictions where consent is required, such as the European Union and United Kingdom. Visitors can change or withdraw consent at any time using the persistent “Cookie Settings” link in the website footer.

We use the following types of cookies:

• Essential Cookies are required for basic site functionality and security. These cannot be disabled.
• Analytics Cookies (e.g., Google Analytics 4 via GTM) help us understand user behavior and site performance in aggregate. These cookies are optional and only activated with user consent.
• Marketing & Retargeting Cookies (e.g., Feathr, Meta/Facebook Pixel, LinkedIn Insight Tag) are used to deliver relevant ads based on your interactions with our website. These cookies are also optional and require prior consent.

Our cookie consent tool, powered by CookieYes, enables visitors to make informed decisions about the types of cookies they allow. Upon first visit, users are presented with the option to accept all cookies, reject non-essential ones or customize their preferences.You can modify or withdraw your consent at any time by accessing the “Cookie Settings” link available in the website footer. Withdrawing consent does not affect the lawfulness of any data processing that occurred before consent was withdrawn.

For visitors from the European Union or United Kingdom, non-essential cookies (such as analytics and advertising) will remain disabled until prior consent is obtained through the CookieYes consent banner.

Global Privacy Control: Where supported, we voluntarily treat GPC signals as an opt-out of sale or sharing cross-context behavioral advertising, unless applicable law requires otherwise.

PHA uses third-party tools to track user interactions on our website and deliver targeted advertising to users based in the United States. These tools use cookies and similar technologies to help us build audience segments, retarget past visitors and measure campaign effectiveness. The data collected may include your IP address, browser type, pages visited, and other usage information.

PHA currently uses:

• Feathr, for building anonymized audiences and delivering relevant ads. View Feathr’s Privacy Policy.
• Meta (Facebook) Pixel, to retarget users and analyze performance on Facebook and Instagram. View Meta’s Privacy Policy.
• LinkedIn Insights Tag, to improve ad targeting and performance. View LinkedIn’s Privacy Policy.

Although PHA has a global audience, advertising campaigns only target users located in the United States. Data collected through these tools is processed in accordance with U.S. law.

If you prefer not to receive targeted advertising, you may adjust your preferences through:

• YourAdChoices.
• Network Advertising Initiative.
• Directly through each platform’s privacy settings.

This section describes your rights and explains how to exercise those rights. Subject to certain limitations (such as our legal obligations), you have the right to access, to obtain a copy of, to correct, to opt-out of the sale or sharing and to delete your Personal Information. You also can limit the means or frequency of certain communications.

PHA does not knowingly request or collect information from any person under 13 years of age without parental consent. If you believe that your child has submitted Personal Information to PHA without your consent and you would like this info restricted or removed, please email Webmaster@PHAssociation.org.

Although our services are intended for U.S.-based audiences and we do not actively target users outside the United States, our website is accessible globally. If you are in the European Economic Area or the United Kingdom, certain data protection rights may apply under the General Data Protection Regulation and the UK GDPR, including:

• The right to access and receive a copy of your personal data.
• The right to correct or delete your data.
• The right to object to or restrict processing.
• The right to data portability.
• The right to lodge a complaint with your data protection authority.

PHA does not collect or process health-related or other special category data from individuals located outside the United States. Information collected from international visitors is limited to general website and communication data (for example, contact form submissions or analytics).

To request access, correction, or deletion of your data, contact us at Webmaster@PHAssociation.org. We will respond in accordance with applicable data protection laws.

All data collected by PHA is processed and stored in the United States, where our servers and service providers are located. By using our website or providing your information, you acknowledge that your personal data may be transferred to and processed in the United States, which may have different data protection standards than your country of residence.

For individuals in the European Economic Area (EEA) or United Kingdom, such transfers are protected by appropriate safeguards consistent with applicable data protection laws, including the use of Standard Contractual Clauses (SCCs) approved by the European Commission, or reliance on the EU-U.S. Data Privacy Framework when applicable.

We take reasonable measures to ensure that any personal information transferred internationally receives adequate protection in accordance with this Privacy Policy.

If you are in the state of Washington, please note that the My Health My Data Act provides additional protections for “consumer health data.” By submitting any information that may relate to your health through our website or related forms, you consent to its collection and use solely for the purpose for which it was provided (for example, to fulfill a support or event request).

PHA values its donors and is committed to protecting their personal information. We do not sell or trade donor data. Information provided in connection with a donation is used to process gifts, issue tax receipts, acknowledge contributions and share updates about the impact of donor support.

PHA may share limited donor information with trusted service providers for payment processing and related services, as described in the How We Share Your Information and Payments and PCI-DSS Compliance sections. These providers are bound by confidentiality and data security obligations.

Donors have the option to:

• Give anonymously or opt out of public recognition at any time.
• Manage communication preferences as described in the Communication Preferences and Restrictions section to control how PHA contacts them.

PHA does not store full credit card numbers or security codes. To update your donor preferences or request anonymity, contact us.

We recognize that you may wish to control or limit the ways in which we contact you and/or share your Personal Information, including for fundraising purposes.

• Email: You can manage your email communication preferences at any time. Each marketing email from PHA includes an unsubscribe link at the bottom, allowing you to opt out of future promotional messages. You may also log in to your PHA account at mypha.PHAssociation.org and customize the types of emails you receive, or stop them entirely by choosing the “unsubscribe from all” option. Please note that even if you unsubscribe, we may still send transactional emails related to your account, donations or events you have signed up for. If you later reengage with PHA (for example, by signing up for an event or newsletter), and do not indicate a preference to remain unsubscribed, we may resubscribe your email to ensure you receive important updates.
• SMS opt-out: If you want to stop receiving text messages from PHA, reply with STOP or UNSUBSCRIBE to the number from which you received the message. After we receive your reply, you no longer will receive text messages from us.
• Targeted advertising: Visit Google Ad Settings page to set preferences. Visit Network Advertising Initiative Opt Out page to opt out.

PHA complies with applicable laws governing electronic communications, including the CAN-SPAM Act and the Telephone Consumer Protection Act (TCPA). All promotional emails include a clear unsubscribe option and PHA’s physical mailing address. For promotional SMS messages, PHA obtains prior express written consent before sending texts. Each text includes instructions on how to opt out by replying STOP and how to request help by replying HELP.

PHA takes reasonable measures to safeguard your personal information and ensure its accuracy and appropriate use. We maintain physical, electronic and administrative safeguards designed to protect your information from unauthorized access, loss, misuse or alteration. Financial transactions are processed securely in compliance with the Payment Card Industry Data Security Standard (PCI DSS). These safeguards may include:

• • Secure socket layer (SSL) encryption.
  • Password-protected servers.
  • Role-based access controls.

• Monitoring tools and periodic security audits.
• Staff training on data protection best practices.

Despite our efforts, no website or data transmission is guaranteed to be 100% secure. PHA makes no warranty, guarantee, or representation that our website is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.

PHA retains personal information only as long as necessary to fulfill the purposes for which it was collected, comply with legal obligations, resolve disputes, and enforce agreements. Retention periods vary depending on the type of data and purpose of use:

• Donation and financial records are retained for the period required by applicable tax and accounting laws (typically seven years).
• Membership and program participation records are kept while your membership or participation is active and for a reasonable period afterward to maintain continuity and respond to inquiries.
• Email and communication preferences are maintained until you unsubscribe or request deletion.
• Analytics and website log data are retained for a shorter period (up to 36 months) to support site performance and usage analysis.
• Event and consent forms (e.g., media releases or voluntary story submissions) are retained if the related content remains active or published, unless you withdraw consent.

When data is no longer needed, PHA securely deletes or anonymizes it in accordance with our data retention and destruction procedures.

When processing donations, membership fees or event registrations, PHA uses third-party payment processors that are certified under the Payment Card Industry Data Security Standard (PCI-DSS). These processors handle all payment transactions on secure, encrypted servers. PHA itself does not store full credit-card numbers, security codes or other sensitive authentication data.

You may request access to review, update or correct your personal information at any time. To do so, contact us at Webmaster@PHAssociation.org. Please provide credible documentation for any errors so we can verify and make appropriate corrections. To protect your privacy and security, we may need to verify your identity before processing your request. Information collected through our website is used to improve user experience and to send requested updates. We maintain this data in a retrievable format that can be amended upon request.

PHA may host or participate in online discussion boards, Facebook groups, email groups or other public forums. These platforms are not private and may be visible to other participants, members or third parties. While we may moderate content to prevent abuse, we cannot guarantee the privacy of any personal, contact or medical information you disclose in these forums. You share information in public spaces at your own risk.

Our website may include links to third-party websites that we believe offer useful or educational content. PHA is not responsible for the content, practices or privacy policies of these external sites. We encourage you to review their privacy policies before providing personal information.

You may visit mypha.PHAssociation.org to update your contact information. To request deletion of your personal data, please contact us by using the information in the “How to contact us” section below.

As PHA evolves, expanding our programs, services and digital tools, this Privacy Policy may be updated to reflect those changes. We reserve the right to revise this policy at any time, for any reason. When we do, we will update the “Last updated” date at the top of this page. We encourage you to review this page periodically to stay informed about how we protect your information.