“Our vision is that all PNH patients globally have access to optimal care and treatment. And our mission to achieve this is by collectively advocating on behalf of all PNH patients.”


Maximising access to medicines for all patients


Supporting Research & Development (R&D) to understand, test, treat and cure PNH including by advocating for PNH patients to be actively involved in R&D from start to finish


Representing patients, advocating and raising awareness with stakeholders relevant to the PNH community, e.g. regulators, IPIG, EuroBloodNet, congresses, policy makers, HTA


Sharing relevant information and educating ourselves

Each year, we write a report on

  • our aims and results
  • the progress we have made
  • our member organisations
  • further acitivities
  • governance and organisation
  • financial review

List of annual accounts