The PNH Research and Support Foundation

If you or someone close to you has recently been diagnosed with PNH, we understand that this can be a confusing and emotional time. Here is some practical advice on how to manage your condition.

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.

Useful Web Sites

• The PNH Support Group
• The Aplastic Anemia & MDS International Foundation
• PNH Info on AAMDS Web Site
• PNH definition on MedLine/National Institutes of Health