See a PNH Specialist
PNH is such a rare condition that most doctors have never seen or treated a patient with the disease. If your doctor does not have experience with PNH, one of the single most important things you can do is to see a specialist who is very familiar with the unique needs of PNH patients, and who knows about the latest treatments.
Learn More About PNH
The Aplastic Anemia & MDS International Foundation is a great resource for educational information on PNH. Visit their site and request free materials by clicking here.
Talk to Other Patients
It can be incredibly valuable to connect with other patients and their families who are living with PNH. There is an active online PNH Support Group at www.pnhdisease.org that can provide helpful first-hand advice and information on managing your condition.
You can also visit us on Facebook and connect with others there!
Empower Yourself as a Patient
See the AA&MDS International Foundation's information on Standing Up for Your Health
