Effective Date: July 12, 2026
At PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”), we understand that individuals and families affected by Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anemia often share deeply personal information with us. We are committed to treating every person with compassion, dignity, and respect while protecting the confidentiality of the information entrusted to our organization.
This Privacy & Confidentiality Policy explains our commitment to safeguarding personal information shared with PNHAA through our website, programs, patient navigation services, financial assistance applications, communications, and other interactions.
Our Commitment
PNHAA is committed to protecting the privacy and confidentiality of every patient, caregiver, family member, volunteer, donor, healthcare professional, and visitor who interacts with our organization.
We will make reasonable efforts to collect only the information necessary to fulfill our charitable mission and will handle that information responsibly, securely, and respectfully.
Respect for Your Privacy
We recognize that information related to health conditions, financial hardship, family circumstances, and personal experiences is sensitive.
We are committed to:
- Treating all personal information with care and respect.
- Protecting confidential communications whenever reasonably possible.
- Limiting access to information to authorized individuals with a legitimate need.
- Using personal information only for purposes consistent with our mission.
- Respecting the wishes of individuals regarding the sharing of their personal stories.
Information You Choose to Share
You may voluntarily provide personal information when you:
- Contact PNHAA.
- Request patient navigation assistance.
- Apply for financial assistance.
- Submit a patient or caregiver story.
- Volunteer with our organization.
- Register for an event.
- Make a donation.
- Subscribe to newsletters.
Providing personal information is entirely voluntary.
Confidential Communications
Communications with PNHAA are treated as confidential whenever reasonably possible.
Information shared through email, contact forms, telephone conversations, online meetings, or written correspondence will only be accessed by individuals who require the information to perform their responsibilities.
We encourage individuals not to send unnecessary medical records or highly sensitive personal information unless specifically requested.
Patient Navigation Confidentiality
During patient navigation services, families may choose to share information regarding their diagnosis, treatment journey, travel needs, financial challenges, or other personal circumstances.
PNHAA will use this information solely to assist with locating educational resources, support services, financial assistance opportunities, treatment center information, or other charitable resources.
Information obtained through patient navigation will not be disclosed without your permission unless required by law.
Financial Assistance Applications
Information submitted as part of a financial assistance application will be treated as confidential.
Access to application information will be limited to authorized individuals responsible for reviewing applications, administering programs, maintaining records, or fulfilling legal and accounting obligations.
PNHAA may request documentation necessary to evaluate eligibility but will collect only information reasonably required for program administration.
Patient Stories & Testimonials
Many families generously choose to share their experiences to encourage and support others.
PNHAA will never publish or publicly share:
- Your personal story
- Your photographs
- Your videos
- Your child’s information
- Your name
- Your medical information
- Identifiable personal details
without your express permission.
Written consent will be obtained before publishing any patient or caregiver story.
You may withdraw your consent at any time, and PNHAA will make reasonable efforts to remove future public use of your information.
Protection of Children’s Information
PNHAA understands that many families seeking support include children diagnosed with PNH or aplastic anemia.
We take special care when handling information relating to minors and will not knowingly publish identifying information regarding a child without permission from a parent or legal guardian.
Internal Access
Access to confidential information is limited to authorized staff members, volunteers, contractors, advisors, or board members who require the information to perform legitimate organizational responsibilities.
Individuals granted access to confidential information are expected to maintain confidentiality and use information only for authorized purposes.
Sharing Information
PNHAA does not sell, rent, trade, or otherwise disclose confidential information for commercial purposes.
Information may only be shared:
- With your permission.
- When required by law.
- To protect the safety of an individual.
- With trusted service providers assisting PNHAA operations under appropriate confidentiality obligations.
HIPAA Statement
PNHAA is a nonprofit educational and patient support organization.
We are generally not considered a HIPAA-covered entity or business associate under the Health Insurance Portability and Accountability Act (HIPAA).
Although HIPAA may not legally apply to information voluntarily shared with us, we are committed to protecting your privacy and handling sensitive information with the same level of care and respect that families expect from a trusted nonprofit organization.
Data Security
PNHAA uses reasonable administrative, technical, and organizational safeguards designed to protect confidential information against unauthorized access, disclosure, alteration, or destruction.
While no electronic communication or storage system can be guaranteed to be completely secure, we continually strive to implement appropriate security practices.
Email Communications
Email should not be considered a completely secure method of communication.
While we take reasonable precautions, individuals should avoid sending highly sensitive medical or financial information through unsecured email whenever possible.
Volunteer & Staff Confidentiality
Staff members, volunteers, contractors, and others acting on behalf of PNHAA are expected to maintain the confidentiality of information obtained while serving the organization.
Confidential information may not be disclosed outside the organization except as authorized or required by law.
Retention of Information
PNHAA retains confidential information only for as long as reasonably necessary to fulfill our charitable mission, comply with legal obligations, administer programs, resolve disputes, and maintain required organizational records.
When no longer needed, information will be securely deleted or destroyed where appropriate.
Your Rights
You may contact PNHAA to:
- Update your personal information.
- Correct inaccurate information.
- Request removal from communications.
- Request deletion of personal information where appropriate.
- Ask questions regarding our confidentiality practices.
Changes to This Policy
PNHAA may update this Privacy & Confidentiality Policy from time to time.
Changes will become effective upon posting to this page with an updated Effective Date.
Contact Us
If you have questions regarding this Privacy & Confidentiality Policy, please contact us.
PNH & Aplastic Anemia Family Alliance (PNHAA)
Website: https://pnhaa.org
Email:legal@pnhaa.org
Our Promise
Every conversation, every story, and every request for help represents a person or family placing their trust in PNHAA. We do not take that responsibility lightly. We are committed to protecting your privacy, respecting your confidentiality, and treating every individual with compassion, dignity, integrity, and respect as we work to ensure that no family faces PNH or aplastic anemia alone.