Effective Date: July 12, 2026
The PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”) welcomes opportunities to work with members of the media, journalists, content creators, researchers, healthcare organizations, and other partners to increase public awareness of Paroxysmal Nocturnal Hemoglobinuria (PNH), aplastic anemia, and the challenges faced by patients and their families.
This Media & Press Policy establishes the principles that guide our interactions with the media while protecting the privacy, dignity, and trust of the individuals and families we serve.
Purpose
PNHAA believes that accurate and responsible media coverage can increase awareness, improve understanding of rare diseases, encourage earlier diagnosis, and connect families with valuable resources.
Our goal is to provide journalists and media professionals with reliable information while ensuring that patient privacy, editorial integrity, and organizational independence remain protected.
Media Inquiries
PNHAA welcomes inquiries from:
- News organizations
- Print publications
- Television stations
- Radio programs
- Podcasts
- Online publications
- Healthcare journalists
- Academic researchers
- Documentary filmmakers
- Content creators
We will make reasonable efforts to respond to legitimate media requests in a timely manner.
Official Spokespersons
To ensure consistency and accuracy, only individuals authorized by PNHAA may speak on behalf of the organization.
Authorized spokespersons may include:
- Executive leadership
- Board-designated representatives
- Communications personnel
- Other individuals specifically authorized by PNHAA
Statements made by volunteers, community members, donors, or supporters do not necessarily represent the views of PNHAA unless specifically authorized.
Patient Privacy
Protecting the privacy of patients and families is one of PNHAA’s highest priorities.
PNHAA will never disclose confidential patient information without the individual’s express permission.
Media representatives should not expect access to patients, caregivers, or family members unless those individuals have voluntarily agreed to participate.
Patient Interviews
PNHAA may assist journalists in connecting with patients or caregivers who voluntarily wish to share their experiences.
Participation is always voluntary.
Patients and families may decline interviews or withdraw participation at any time.
Photography & Video
Photographs, video recordings, and interviews involving patients, caregivers, volunteers, or event participants require appropriate permission before publication or distribution.
Written consent may be required before photographs or recordings are used by PNHAA.
Educational Information
PNHAA strives to provide accurate, evidence-based educational information to members of the media.
Educational information should not be interpreted as medical advice or clinical recommendations.
Medical questions should be directed to qualified healthcare professionals.
Editorial Independence
PNHAA maintains complete editorial independence.
Media interviews, publications, press releases, and public statements are developed independently and are not influenced by sponsors, donors, healthcare organizations, pharmaceutical companies, or other funding partners.
No Endorsements
Participation in interviews or media coverage does not constitute endorsement by PNHAA of any:
- Healthcare provider
- Hospital
- Medication
- Treatment
- Medical device
- Company
- Product
- Organization
Similarly, references to PNHAA by outside organizations should not imply endorsement unless expressly authorized in writing.
Use of the PNHAA Name & Logo
Use of the PNHAA name, logo, trademarks, or branding in news articles or editorial coverage is generally permitted for the purpose of accurately identifying the organization.
Any commercial, promotional, fundraising, or advertising use of PNHAA’s name or logo requires prior written permission.
Press Releases
PNHAA may publish press releases regarding:
- Organizational announcements
- Program launches
- Fundraising initiatives
- Educational campaigns
- Advocacy efforts
- Community events
- Research awareness
- Partnership announcements
Press releases are intended to provide factual information and should not be interpreted as medical advice.
Research & Statistics
PNHAA strives to use reputable sources when discussing medical research, statistics, and scientific developments.
Because research evolves over time, published information may change as new evidence becomes available.
Social Media & Digital Media
Media organizations and content creators may share links to publicly available PNHAA content.
Reproduction of substantial portions of PNHAA content should comply with our Copyright Policy and applicable intellectual property laws.
Requests for Expert Commentary
PNHAA may provide commentary regarding:
- Patient experiences
- Caregiver challenges
- Rare disease awareness
- Patient navigation
- Healthcare advocacy
- Financial hardship experienced by families
- General educational information regarding PNH and aplastic anemia
PNHAA does not provide medical diagnoses, treatment recommendations, or individualized medical opinions.
Media Accuracy
PNHAA appreciates opportunities to review factual statements relating to our organization prior to publication when feasible.
However, editorial decisions remain the responsibility of the publishing organization.
Requests for factual verification should not be interpreted as requests for editorial approval.
Crisis Communications
During emergencies, organizational incidents, or other significant events, PNHAA may designate specific spokespersons to coordinate public communications.
Information released during such situations will prioritize accuracy, transparency, and respect for affected individuals.
Policy Changes
PNHAA reserves the right to revise this Media & Press Policy at any time to reflect changes in organizational practices, legal requirements, or communications standards.
Updated versions become effective upon publication on this website.
Media Contact
Members of the media seeking interviews, comments, organizational information, or additional resources are encouraged to contact PNHAA.
PNH & Aplastic Anemia Family Alliance (PNHAA)
Website: https://pnhaa.org
Email: press@pnhaa.org
Our Commitment
PNHAA believes that responsible journalism and accurate public education play an important role in improving awareness of PNH and aplastic anemia. We are committed to working collaboratively with the media while protecting patient privacy, preserving editorial independence, and ensuring that every story reflects our mission of supporting patients, caregivers, and families with compassion, integrity, and respect.