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


- chair -
Maria Piggin

PNH Support

- Treasurer -
Ulrike goebel

Aplastische Anämie
& PNH e.V.

- secretary -
Pascale Burmester

Stiftung lichterzellen

the members of the alliance

The 9 patient groups which currently make up the Alliance are from 8 different countries: England (incl Wales and Northern Ireland), Germany (two groups), Russia, Spain, the US, The Netherlands, Ukraine, and Poland.

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.