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Effective Date: July 12, 2026

PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”) respects your privacy and is committed to protecting the personal information you share with us. This Privacy Policy explains how we collect, use, protect, and disclose your information when you visit our website, communicate with us, make a donation, apply for assistance, volunteer, or participate in our programs.

By accessing or using our website, you agree to the terms of this Privacy Policy.

Information We Collect

Depending on how you interact with PNHAA, we may collect the following information.

Personal Information

  • Name
  • Email address
  • Mailing address
  • Telephone number
  • Organization or employer (if applicable)

Donation Information

When you make a donation, we may collect information necessary to process your contribution, including:

  • Donation amount
  • Donation date
  • Billing information
  • Payment confirmation

PNHAA does not store complete credit card or banking information. Payments are processed securely by trusted third-party payment processors.

Patient & Family Information

If you contact us or request assistance, you may voluntarily provide information such as:

  • General information regarding PNH or aplastic anemia
  • Travel or lodging needs
  • Financial hardship information
  • Questions or comments
  • Other information you choose to share

Providing this information is entirely voluntary.

Website Usage Information

When you visit our website, certain information may be collected automatically, including:

  • IP address
  • Browser type
  • Device type
  • Operating system
  • Pages visited
  • Time and date of your visit
  • Referring website
  • General geographic location

Cookies & Analytics

PNHAA may use cookies and similar technologies to:

  • Improve website performance
  • Remember user preferences
  • Measure website traffic
  • Analyze visitor behavior
  • Improve user experience

We may utilize services including:

  • Google Analytics
  • Google Search Console
  • Embedded YouTube videos
  • Social media integrations

You may disable cookies through your browser settings; however, some website features may not function properly.

How We Use Your Information

We may use your information to:

  • Respond to your inquiries
  • Provide requested resources
  • Process donations
  • Administer financial assistance programs
  • Communicate regarding programs or events
  • Send newsletters (with your consent)
  • Improve our website and services
  • Analyze website performance
  • Prevent fraud and unauthorized activity
  • Comply with applicable laws

We do not sell your personal information.

Financial Assistance Applications

If you apply for financial assistance, we may use the information you provide to:

  • Review eligibility
  • Verify submitted information
  • Communicate regarding your application
  • Issue approved assistance
  • Maintain records required for nonprofit compliance

Only authorized individuals involved in administering the program will have access to this information.

Patient Stories & Testimonials

PNHAA will never publish your personal story, photographs, videos, or identifying information without your express permission.

Written consent will be obtained before any patient or family story is shared publicly.

Email Communications

If you subscribe to our newsletter, we may send:

  • Educational resources
  • Research updates
  • Organization news
  • Event announcements
  • Fundraising campaigns

You may unsubscribe at any time using the link included in every email.

How We Share Information

PNHAA does not sell, rent, or trade personal information.

Information may only be shared:

  • With trusted service providers that assist our operations
  • When required by law
  • To protect the rights or safety of PNHAA or others
  • With your express permission

Third-Party Websites

Our website may contain links to third-party websites including hospitals, treatment centers, nonprofit organizations, government agencies, social media platforms, and other external resources.

PNHAA is not responsible for the privacy practices or content of third-party websites. We encourage you to review their privacy policies before providing personal information.

Data Security

We use reasonable administrative, technical, and physical safeguards designed to protect your personal information against unauthorized access, disclosure, alteration, or destruction.

While no internet transmission or electronic storage method is completely secure, we strive to use industry-standard security practices to safeguard your information.

Data Retention

We retain personal information only as long as reasonably necessary to:

  • Provide requested services
  • Meet legal or regulatory obligations
  • Maintain nonprofit records
  • Resolve disputes
  • Enforce our policies

When information is no longer required, it will be securely deleted or anonymized when appropriate.

Children’s Privacy

PNHAA does not knowingly collect personal information directly from children under the age of 13 without parental or guardian consent.

If you believe a child has provided personal information without appropriate permission, please contact us so we may remove the information.

Health Information

PNHAA is a nonprofit educational and patient support organization.

We are not a healthcare provider, medical practice, or health insurance provider and generally are not a HIPAA-covered entity.

Although HIPAA may not apply to information voluntarily shared with us, we are committed to protecting your privacy and handling your information responsibly and confidentially.

Your Privacy Choices

You may request to:

  • Access your personal information
  • Correct inaccurate information
  • Update your contact information
  • Request deletion of personal information where appropriate
  • Unsubscribe from email communications

Please contact us using the information provided below.

State Privacy Rights

Residents of certain states may have additional privacy rights under applicable law. Where required, PNHAA will honor valid requests concerning access, correction, deletion, or other rights available under applicable privacy laws.

International Visitors

PNHAA is located in the United States. If you access our website from outside the United States, you understand that your information may be transferred to and processed within the United States.

Data Breach Response

If we become aware of a security incident involving personal information, we will investigate promptly and provide notifications as required by applicable law.

Changes to This Privacy Policy

We may update this Privacy Policy from time to time. Any changes will be posted on this page along with the revised Effective Date.

Your continued use of our website following any updates constitutes acceptance of the revised Privacy Policy.

Contact Us

If you have questions regarding this Privacy Policy or our privacy practices, please contact us.

PNH & Aplastic Anemia Family Alliance (PNHAA)
Website: https://pnhaa.org
Email: legal@pnhaa.org

Our Commitment to Privacy

Protecting your privacy is part of our commitment to serving patients, caregivers, and families with compassion, integrity, and respect. Whether you are seeking information, sharing your story, making a donation, or requesting assistance, we are committed to handling your information responsibly and using it only to further our mission of supporting individuals and families affected by PNH and aplastic anemia.