“Our vision is that all PNH patients globally have access to optimal care and treatment.”
specific objectives
Medicines
Maximising access to medicines to all patients
R&D
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 end
ADVOCACY
Representing patients, advocating and raising awareness with stakeholders relevant to the PNH community, e.g. regulators, IPIG, EuroBloodNet, congresses, policy makers
EDUCATION
Sharing relevant information and educating ourselves