Our mission

The mission of this initiative is to ensure that the challenges faced by patients living with PNH are not overlooked. The group aims to develop policy recommendations collaboratively and drive change both at global and national level.
Partnering4PNH is a global multistakeholder policy initiative which brings together PNH experts with a range of perspectives. Its members are representatives of patient associations, clinicians, nurses and industry from different European countries such as UK, Spain, Ukraine but also from Canada and Australia. Partnering4PNH has two political Co-Chairs, who are the Members of the European Parliament (MEPs) István Ujhelyi (Hungary, Socialist and Democrats) and Stelios Kympouropoulos (Greece, Christian Democrats). The Partnering4PNH initiative is organised and funded by the Swedish Orphan Biovitrum AB (Sobi), whilst the Secretariat is led by Evoke Incisive Health.