• Welcome to PNH Support!

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 together with the stakeholders in our world.

About Us

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

Make A Donation

If you would like to make a donation to PNH Support please visit our page on the “Make a Donation" website which can be found here:


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

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.
Read moreDiagnosis


14 February

Senedd Rare Disease Day Reception

  • 6:00 pm to 8:00 pm
  • Senedd
27 February

Westminster Rare Disease Day Reception

  • 1:00 pm to 3:30 pm
  • Houses of Parliament
05 March

Holyrood Rare Disease Day Reception

  • 6:00 pm to 8:00 pm
  • Holyrood