Welcome to the PNH Community

With a rare condition like paroxysmal noctural hemoglobinuria (PNH), you may feel like it’s hard for others to understand what you’re going through. But you’re not alone. Connecting with other PNH patients can help you get the support, advice, and education you need to cope with your disease.

Explore this site to learn more about the disease, register for events where you can meet others with PNH, and speak with a registered nurse for free, personalized support and education.







"I would love to share my journey with others, and hopefully inspire them to fight on harder . . . I feel like when people see 'one of their own' battling every day, the same that they are, it gives them reassurance and hope that they can beat this thing too."

- Joe

"This year was wonderful because I had the opportunity to contribute more to the PNH community. I am in the process of learning more and more about our behavior as humans to be able to help patients change their quality of life. I am very thankful to have you in our lives."

- Victor

"I look forward to [the events] every year, and meeting new people and seeing the familiar faces from past meetings . . . It really does a lot for me to be able to talk to people with PNH. I feel that we have an instant connection."

- Lisa