Living with PNH

Living with PNH

Supporting information to help you manage PNH


Paroxysmal nocturnal haemoglobinuria, or PNH, is a rare disease that may be associated with a range of symptoms.1

My-PNH.com was designed to offer you important information, advice and support with your daily life living with PNH. 

Find out more about PNH support groups and strategies for managing PNH. Better Living with PNH


Advice on navigating work, family and everyday life with PNH

Talk about your PNH with confidence

Managing your physical and emotional wellbeing

My Voice My PNH Care booklet

You may find this informational booklet helpful in making the most of your care. Your family or friends can also benefit from the information in the brochure, as it may help them better understand your needs.


1. Hill A, et al. Paroxysmal nocturnal haemoglobinuria. Nat Rev Dis Primers. 2017; 3:17028.