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Effective Date: July 12, 2026

The PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”) is committed to providing accurate, balanced, evidence-based, and trustworthy educational information for individuals and families affected by Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anemia.

This Editorial Policy explains how our educational content is created, reviewed, updated, and maintained to ensure the highest standards of integrity, transparency, and independence.

Purpose

Our educational content exists to help patients, caregivers, families, healthcare professionals, and the public better understand PNH, aplastic anemia, and the resources available to support those living with these rare diseases.

Our goal is to educate—not persuade—and to empower individuals with reliable information that supports informed conversations with their healthcare providers.

Editorial Principles

All content published by PNHAA is guided by the following principles:

  • Accuracy
  • Objectivity
  • Evidence-Based Information
  • Transparency
  • Editorial Independence
  • Patient-Centered Communication
  • Accessibility
  • Compassion

Editorial Independence

PNHAA maintains complete editorial independence.

No donor, sponsor, advertiser, healthcare organization, pharmaceutical company, government agency, board member, volunteer, or outside organization may influence the factual accuracy or editorial conclusions of our educational content.

Editorial decisions are made solely by PNHAA in the best interests of the individuals and families we serve.

Content Sources

Whenever reasonably possible, educational content is based upon information from reputable sources, including:

  • Peer-reviewed medical literature.
  • Professional medical organizations.
  • Government health agencies.
  • Academic institutions.
  • Published clinical guidelines.
  • Recognized patient advocacy organizations.
  • Qualified healthcare professionals.

Whenever appropriate, we encourage readers to consult the original source materials.

Medical Review

PNHAA strives to ensure medical information is accurate and current.

When appropriate, educational content may be reviewed by qualified healthcare professionals or individuals with relevant subject matter expertise.

Medical review helps improve accuracy but does not replace individualized medical advice from a patient’s healthcare team.

Patient-Friendly Language

Medical information can be complex.

Whenever possible, PNHAA presents information using clear, understandable language while maintaining scientific accuracy.

Medical terminology may be explained to improve understanding for patients and caregivers.

Research & Emerging Information

Medical research evolves rapidly.

Articles discussing emerging treatments, clinical trials, or ongoing research are intended for educational purposes only.

Early research findings should not be interpreted as established medical recommendations.

Clinical Trials

Information regarding clinical trials is provided to increase awareness of available research opportunities.

PNHAA does not recommend participation in any specific clinical trial.

Participation in clinical research should always be discussed with qualified healthcare providers.

Healthcare Providers & Treatment Centers

References to physicians, hospitals, treatment centers, clinics, laboratories, or healthcare professionals are provided as educational resources.

Unless expressly stated, inclusion does not constitute endorsement, recommendation, or certification by PNHAA.

Medications & Treatments

Educational information may include discussion of medications, therapies, procedures, or treatment options.

PNHAA does not recommend one medication or treatment over another.

Treatment decisions should always be made in consultation with qualified healthcare professionals.

Patient Stories

Patient and caregiver stories represent personal experiences.

Individual experiences may differ significantly from those of other patients.

Personal stories should not be interpreted as medical advice or evidence of treatment effectiveness.

Sponsored Content

If educational content is sponsored, funded, or supported by an outside organization, that relationship will be clearly disclosed.

Sponsorship does not influence editorial decisions or factual accuracy.

Advertising

Advertising and sponsorship acknowledgments will be clearly distinguishable from editorial content.

Advertisements do not constitute endorsement by PNHAA.

Healthcare & Pharmaceutical Sponsors

PNHAA may receive financial support from pharmaceutical companies, healthcare organizations, foundations, or other sponsors.

These organizations do not control:

  • Article topics.
  • Educational conclusions.
  • Research summaries.
  • Treatment discussions.
  • Patient resources.
  • Editorial opinions.

Corrections

PNHAA is committed to correcting factual errors promptly.

If an error is identified, we will review the information and make corrections when appropriate.

Readers are encouraged to report potential inaccuracies.

Content Updates

Educational content is reviewed periodically and updated when appropriate to reflect:

  • New medical research.
  • Updated treatment guidelines.
  • Changes in clinical practice.
  • Program updates.
  • Organizational improvements.

Conflicts of Interest

Individuals involved in creating or reviewing educational content are expected to disclose any actual or potential conflicts of interest.

Editorial decisions are made independently and in accordance with PNHAA’s Conflict of Interest Policy.

Medical Disclaimer

All educational information published by PNHAA is intended for informational purposes only.

Our content should never replace professional medical advice, diagnosis, or treatment.

Readers should always consult qualified healthcare providers regarding their medical care.

Artificial Intelligence

PNHAA may use artificial intelligence and other technology tools to assist with drafting, organizing, summarizing, or improving educational content.

All published content is reviewed by PNHAA prior to publication to help ensure it aligns with our editorial standards, mission, and commitment to providing accurate, evidence-based information.

Reader Feedback

We welcome constructive feedback regarding our educational content.

Suggestions, corrections, and recommendations help us continually improve the quality, clarity, and usefulness of the information we provide.

Policy Changes

PNHAA reserves the right to revise this Editorial Policy as our organization, editorial practices, or applicable standards evolve.

Updates become effective upon publication on this website.

Contact Us

If you have questions regarding this Editorial Policy or wish to report an error, please contact us.

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

Our Commitment

PNHAA is committed to providing trustworthy, evidence-based educational information that empowers patients and families to better understand PNH and aplastic anemia. We believe that accurate information, presented with compassion and integrity, helps individuals make informed decisions alongside their healthcare team. Every article, guide, and resource we publish reflects our commitment to independence, transparency, and putting patients and families first.