Effective Date: July 12, 2026
The PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”) is committed to fostering a welcoming, respectful, and supportive community for individuals and families affected by Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anemia.
These Community Guidelines apply to all interactions within PNHAA’s online communities, including our website, blog comments, social media pages, online groups, forums, virtual events, webinars, and any other platform operated by or on behalf of PNHAA.
Our goal is to create a safe environment where patients, caregivers, family members, healthcare professionals, volunteers, and supporters can learn, share experiences, and support one another with compassion and respect.
Our Community Values
Every member of the PNHAA community is expected to contribute to an environment built upon:
- Compassion
- Respect
- Kindness
- Honesty
- Inclusiveness
- Empathy
- Constructive communication
- Support for one another
Be Respectful
Treat every member of our community with dignity and respect.
We encourage thoughtful discussion, even when opinions differ. Healthy conversations are welcome, but personal attacks are not.
Please remember that many members of our community are facing serious medical challenges.
Be Supportive
Offer encouragement, understanding, and constructive support whenever possible.
Everyone’s experience with PNH or aplastic anemia is unique, and no two journeys are exactly alike.
Respect that what works for one individual may not work for another.
No Medical Advice
Community members are welcome to share their personal experiences.
However, members should not:
- Diagnose medical conditions.
- Recommend specific treatments.
- Tell others to stop prescribed medications.
- Discourage individuals from seeking professional medical care.
- Present personal opinions as medical facts.
Medical decisions should always be made in consultation with qualified healthcare providers.
Respect Privacy
Protect your own privacy and the privacy of others.
Please do not post:
- Personal medical records.
- Insurance information.
- Financial account information.
- Government identification numbers.
- Private contact information belonging to another person.
- Any confidential information without permission.
Sharing Personal Experiences
We encourage patients and caregivers to share their personal stories.
When sharing experiences, please remember:
- Your experience is your own.
- Individual outcomes vary.
- Your experience may not represent typical results.
- Personal stories should not replace professional medical guidance.
No Harassment or Bullying
PNHAA has zero tolerance for harassment or abusive behavior.
Examples include:
- Personal attacks.
- Threats.
- Bullying.
- Discrimination.
- Hate speech.
- Intimidation.
- Repeated unwanted contact.
- Targeted harassment.
Violations may result in removal from the community.
No Discrimination
PNHAA welcomes everyone regardless of:
- Age
- Disability
- Race
- Ethnicity
- National origin
- Religion
- Sex
- Gender
- Sexual orientation
- Veteran status
- Any other protected characteristic
Discrimination or hateful conduct will not be tolerated.
No Spam or Self-Promotion
Please do not use PNHAA communities to:
- Advertise products or services.
- Promote businesses.
- Solicit donations without approval.
- Post repetitive messages.
- Distribute unsolicited marketing materials.
- Recruit members for unrelated organizations.
Approved partners or sponsors must comply with PNHAA’s Sponsorship Policy.
Respect Copyright
Please share only content that you own or have permission to share.
Do not post copyrighted materials without authorization.
When referencing articles or research, share links whenever possible rather than copying entire works.
Misinformation
PNHAA is committed to promoting accurate, evidence-based information.
Content that is knowingly false, misleading, fraudulent, or likely to create harm may be removed.
Moderators may provide additional educational resources when appropriate.
Commercial Activity
Community spaces are intended for education and support—not commercial activity.
Unauthorized fundraising, sales, affiliate marketing, investment opportunities, or business promotions are prohibited.
Political and Religious Discussions
Respectful discussion may occur naturally within our community.
However, discussions that become divisive, unrelated to our mission, or interfere with the supportive environment may be moderated or removed.
Moderation
PNHAA reserves the right to moderate community discussions to maintain a safe, respectful, and supportive environment.
Moderation actions may include:
- Editing or removing content.
- Closing discussions.
- Issuing warnings.
- Temporarily restricting participation.
- Permanently removing individuals from the community.
Reporting Concerns
If you believe content violates these Community Guidelines, please report it to PNHAA.
Reports will be reviewed as promptly as reasonably possible.
We may not be able to disclose the outcome of moderation decisions due to privacy considerations.
Disclaimer
Opinions expressed by community members are their own and do not necessarily reflect the views of PNHAA.
Participation in our community does not establish a medical, legal, or professional relationship with PNHAA.
Changes to These Guidelines
PNHAA may revise these Community Guidelines at any time to improve the safety and effectiveness of our community.
Updated versions become effective upon publication on this website.
Contact Us
If you have questions regarding these Community Guidelines or wish to report inappropriate behavior, please contact us.
PNH & Aplastic Anemia Family Alliance (PNHAA)
Website: https://pnhaa.org
Email: community@pnhaa.org
Our Commitment
PNHAA exists to ensure that no family faces PNH or aplastic anemia alone. We believe that every person deserves to be heard, respected, and supported. By treating one another with kindness, compassion, and understanding, we can build a community where patients, caregivers, families, healthcare professionals, and advocates work together to provide hope, encouragement, and trusted support throughout every stage of the journey.