Supporting Families. Sharing Knowledge. Inspiring Hope.
The PNH & Aplastic Anemia Family Alliance (PNHAA) was founded with one simple belief: no family should have to face PNH or aplastic anemia alone.
A diagnosis of a rare blood disorder changes everything. Suddenly, families are faced with unfamiliar medical terminology, difficult treatment decisions, financial uncertainty, travel to specialized treatment centers, and countless questions that often don’t have easy answers. We understand because we’ve lived it ourselves.
PNHAA was created to be the resource we wished existed when our own journey began—a place where families can find trusted information, practical guidance, compassionate support, and hope.
Our Story
PNHAA was founded by parents whose son was diagnosed with both Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anemia.
Like many families facing a rare disease, our lives changed overnight. We quickly found ourselves learning an entirely new language of blood counts, bone marrow biopsies, transfusions, medications, treatment options, and specialized care. We spent countless hours traveling to appointments, searching for reliable information, asking difficult questions, and trying to balance everyday life while supporting our son through an uncertain journey.
We also experienced the financial realities that so many families face. Hospital parking, fuel, meals away from home, lodging, missed work, and unexpected expenses add up quickly. Even small costs become significant when treatment becomes part of everyday life.
Throughout our journey, one thing became clear: families need more than medical care. They need someone to help them navigate the unknown. They need reliable information they can trust. They need practical resources. Most importantly, they need to know they are not alone.
That experience became the foundation for PNHAA.
Our Mission
Our mission is to improve the lives of individuals and families affected by PNH and aplastic anemia through education, patient navigation, financial assistance, advocacy, and compassionate community support.
We work to reduce barriers, ease uncertainty, and connect families with the resources they need throughout every stage of their journey.
Our Vision
We envision a future where every individual diagnosed with PNH or aplastic anemia has access to trusted information, experienced guidance, meaningful support, and a community that understands what they are going through.
Our goal is to become a trusted national resource for patients, caregivers, healthcare professionals, researchers, and advocates working together to improve the lives of those affected by these rare diseases.
What We Do
PNHAA exists to make the journey a little easier for families by providing:
- Evidence-based educational resources.
- Patient and caregiver navigation.
- Directories of treatment centers and specialty clinics.
- Financial assistance resources.
- Emergency assistance grants, as funding allows.
- Research and clinical trial awareness.
- Patient and caregiver stories.
- Advocacy and rare disease awareness initiatives.
- Connections to trusted nonprofit and community resources.
- A supportive community that understands the challenges of living with a rare blood disorder.
Why We Exist
Rare diseases can feel incredibly isolating.
Many families have never heard of PNH or aplastic anemia until someone they love receives a diagnosis. Information can be difficult to find, and support often feels scattered across many different organizations and resources.
We believe families deserve one place they can turn for trusted information, practical guidance, and compassionate support.
Our hope is that every family who discovers PNHAA immediately feels what we wished we had felt in those early days:
You are not alone, and there are people who understand your journey.
Our Values
Everything we do is guided by the values that define our organization.
- Compassion — We lead with empathy because we understand the challenges families face.
- Integrity — We are committed to honesty, transparency, and ethical leadership.
- Education — Reliable information empowers patients and caregivers to make informed decisions with their healthcare teams.
- Respect — Every person’s journey deserves dignity, understanding, and support.
- Community — No one should have to navigate a rare disease alone.
- Stewardship — We responsibly manage every donation and every opportunity entrusted to us.
- Hope — Even during life’s most difficult moments, hope can make all the difference.
Our Commitment to Families
Whether you have just received a diagnosis or have been living with PNH or aplastic anemia for years, our commitment remains the same.
- Provide trustworthy, evidence-based educational resources.
- Treat every family with compassion and respect.
- Protect your privacy and confidentiality.
- Maintain independence in our educational content.
- Use every donation responsibly and transparently.
- Advocate for greater awareness, education, and support.
- Continue building programs that make a meaningful difference in the lives of patients and caregivers.
Independent & Patient Focused
PNHAA is an independent nonprofit organization dedicated to serving patients and families.
While we may receive support from individuals, foundations, corporations, healthcare organizations, and other partners, our mission remains unchanged. Our educational content, patient navigation services, and financial assistance programs are developed independently and guided solely by what is in the best interests of the families we serve.
We do not provide medical advice, diagnose medical conditions, or recommend specific treatments or healthcare providers. We encourage every patient to work closely with their healthcare team when making medical decisions.
Looking Ahead
PNHAA is just beginning.
As we grow, we hope to expand our educational library, strengthen our emergency assistance programs, increase awareness of PNH and aplastic anemia, build partnerships with hospitals and advocacy organizations, support research awareness, and provide meaningful assistance to families across the country.
Every article we publish, every family we support, every dollar donated, and every partnership we build moves us closer to that vision.
Join Our Mission
Whether you’re a patient, caregiver, family member, healthcare professional, researcher, volunteer, donor, or advocate, you are welcome at PNHAA.
Together, we can build a stronger community, raise awareness, support families through difficult moments, and ensure that no one has to face PNH or aplastic anemia alone.
Our Promise
PNHAA was born from our family’s experience, but it exists for every family facing PNH or aplastic anemia. We know that behind every diagnosis is a person with hopes, fears, questions, and loved ones walking beside them. Our promise is to meet every family with compassion, provide information they can trust, support them through life’s challenges, and remind them—every step of the way—that they are never alone.