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 was quite impressed by [Dr T] and how he carefully listened to and answered the questions of folks who obviously had very pressing issues on their mind . . . We enjoyed the conference and meeting the other folks . . . we look forward to attending future meetings."

- Bruce

"It was nice finally meeting others like me. I really enjoyed the convention as well. I especially liked listening to the doctor who explained a lot in terms that even I [could] understand."

- Jerry

"I am still amazed that [Dr B] would dedicate her life’s work to such a rare disease and people like me! . . . I can’t emphasize just how happy I am to have met fellow PNH members. I needed to hear their stories. I plan to stay in touch with quite a few folks I met. With so many positive things coming together, it’s hard to even remember that we’re afflicted with a life-threatening disease."

- Angela