Your healthcare team

With rare diseases like PNH, it is common for doctors to take a team approach. You and your doctor may choose to work with someone who has more experience —especially if you are the only one with PNH your doctor is handling.

There are doctors who conduct research in PNH, or who care for a greater number of people who have the disease. Speak with your doctor about how you could benefit by seeing a doctor with this kind of experience from time to time.

Together, you and your doctor and nurses can develop a plan to address 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 with 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 you may not be able to do with others: talk about your disease. Call 1-888-765-4747 (Monday through Friday 8:30 AM-5 PM).

Next: You are not alone.