And get the help you need along the way

PNH can be a scary disease. But understanding how it works in your body can help you see it differently. It is possible to manage PNH.

And, even though it’s rare, you don’t have to do it alone. There are a number of people and resources available to help you take control of your disease.

Your healthcare team

Together, you and your doctor and nurses can develop a plan to manage your PNH and watch your progress.

But your healthcare team is not just a source for managing PNH — they’re also a source of information. Feel free to ask them any questions about PNH.

Your loved ones

PNH can take a lot out of you, so it’s important to lean on friends and family for support.

Be sure to let them know what PNH is and how you’re feeling day to day. That way they’ll know when they need to reach out to lend a helping hand.

Your PNH community

PNH is a rare disease, but that makes those who have it that much closer. Connect with others with PNH to help you learn about, cope with, and confront your disease.

There are a number of online resources you can use to find support.

OneSource™

Sometimes you just need to talk to someone who understands. Through OneSource, you can do just that.

With one phone call, you can reach an Alexion Nurse Case Manager who can provide information and helpful tools to help you manage your PNH. They can connect you with other people who have the disease.

Ask questions. Find answers. And do something that you may not be able to do with others: talk about your disease.