“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.”

specific objectives


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