.
Our Board anchor
Welcome to the PNH Global Alliance
We created the alliance in December 2018 in order to share information and expertise, collaborate on common challenges, join forces on issues important to our community and leverage our combined voices for the benefit of the PNH community. The members of the Alliance are set out below. PNH patient organisations (or those supporting PNH patients) are welcome to apply for membership of the Alliance. Please contact us for more details. We are aware that PNH patient organisations may have limited capacity and resource and that sharing our combined knowledge is beneficial to us all. We meet virtually regularly and aim to meet in person annually.
View our leaflet
Ulrike Goebel
Chair
Aplastische Anämie & PNH e.V.
NENAD PAVLOVIC
Secretary
PNH Srbija
Cristina Miari paulino
Treasurer
Hemoglobinúria Paroxística Noturna (HPN) e Anemia Aplástica (AA), Brazil
Susuma Bishoyi Ratna
Board member
PNH Patient Support India
our members anchor
the members of the alliance
The 15 patient groups currently making up the Alliance are from 13 different countries: Australia, Brazil (two groups), England (including Wales and Northern Ireland), Germany (two groups), India, the Netherlands, New Zealand, the combined Nordic countries, Poland, Russia, Serbia, Spain, and Ukraine.
specific objectives
Some of our specific objectives are: maximising access and availability of medicines for all PNH patients and promoting research and development for medicines and procedures to treat and cure PNH.
