PNH resources
Useful PNH resources
A variety of resources are provided here to help you learn more about PNH and include practical tips in making the most of your care.
Patient advocacy and support groups
Patient advocacy and support groups offer a wealth of information and advice that you may find useful and they may be able to connect you with other people who are also living with PNH.
For more information about patient advocacy and a local patient support group in your country, please refer to the PNH Global Alliance. For medical advice please contact your doctor. For more information and support on managing your PNH from a holistic approach, Better Living with PNH offers a range of different materials on yoga, nutrition, fitness and mindfulness.
Top tips when preparing for your appointment
This infographic was designed to support you in preparing for your next appointment with your healthcare team. It provides guidance on how to prepare for your appointment and different topics linked to PNH that you may want to discuss.
PNH symptom tracker
This symptom tracker was designed to support you in recording and monitoring your PNH symptoms over time.
My Voice My PNH Care booklet
This informational booklet was designed to support you in making the most of your care.
Your family or friends may also benefit from the information in the brochure, as it may help them better understand your needs.
Living with Paroxysmal Nocturnal Haemoglobinuria:
This infographic was designed to provide additional facts on PNH, its symptoms and the impact on everyday life.
The Science behind Paroxysmal Nocturnal Haemoglobinuria:
This infographic was designed to provide a deeper understanding of the science behind PNH and how it affects the human body.
What is Haemolysis:
This infographic was designed to help people with PNH and their caregivers better understand complement-mediated hemolytic anaemia, one of the main symptoms of PNH.
