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.

our board

- chair -
Maria Piggin

PNH Support

- Treasurer -
Ulrike goebel

Aplastische Anaemie
& PNH eV

- secretary -
Barry katsof

Canadian Association of PNH Patients

- board member -
Pascale Burmester

Stiftung Lichterzellen

- board member -
Cor Koekkoek

Stichting AA & PNH Contactgroep

the members of the alliance

The 10 patient groups which currently make up the Alliance are from 8 different countries: England (incl Wales and Northern Ireland), Canada (two groups), Germany (two groups), Russia, Spain, the US, The Netherlands and Ukraine. Are you interested in what we did and how we did it? Read here our financial and annual accounts.

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.