Take our National Community Survey by 15 December!

If you, a friend or family member live in the UK with a rare bone marrow failure condition (including PNH), we would love you to take a 15min survey to help improve understanding of patient/carer journeys and lived experience, identify concerns/gaps in existing support, and measure quality of life and the impact of living with the condition

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Welcome to PNH Support!

We are a community of people living with PNH (and their family members) in England, Wales and Northern Ireland supporting one other, sharing our experiences and engaging with the stakeholders in our world.

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What Is Paroxysmal Nocturnal Haemoglobinuria (PNH)

PNH is a rare blood disease where PNH affected blood cells are attacked by the complement part of the body’s immune system.

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About Us

PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518).

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Our Resources area has lots of information available and there is no need to register for an account if you don't want to.

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Make A Donation

If you would like to make a donation to PNH Support please visit our donation page which can be found here:


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