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 a rare condition. So rare, that many 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. Find a doctor who knows about the latest PNH treatments. To fulfill the mission of the PNH Research & Support Foundation to provide patient support, the Foundation strives to ensure that all PNH patients can see a PNH specialist to seek the best course of treatment. The Foundation also help patients with costs related to bone marrow transplants in cases where this treatment is required.
Our strategic partner, the Aplastic Anemia & MDS International Foundation is a great resource for educational information on PNH. Visit their website to explore the resources and free materials
Talk to Other Patients
Many patients and their families facing a rare disease like PNH, find it valuable to connect with others who are living with PNH. There are two active online communities - PNH Support Group and Marrowforums 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! Your disease may be rare, but you are not alone!