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.

"We look forward to [the events] every year, catching up with everybody. The meetings are always so informative and a great opportunity to meet another PNH expert and hear his views and what's new for us PNH patients."

- Susan

"It's so helpful, and comforting, to meet other patients and their families who face similar medical challenges. We can, and do, learn from each other."

- Eloise

"It was great to meet everyone . . . I’m happy I had the opportunity to spend time with all of you courageous/strong individuals. I especially enjoyed the conversations I had with you all. Hope that we can get together again in the near future at another convention."

- Jerry