Who we are
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 founding members [link to founding members page] of the alliance are from 8 countries around the world. PNH patient organisations (or those supporting PNH patients) are able to apply for membership of the alliance. Please see our membership page [link to membership page] 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.
The following organisations are the founding members of the PNH Global Alliance (the “Alliance”):
- PNH Support (England, Wales and Northern Ireland)
- Stichting AA & PNH Contactgroep (the Netherlands)
- Canadian Association of PNH Patients (Canada)
- Association HPN FRANCE Aplasie Médullaire (France)
- Stiftung Lichterzellen (Germany)
- Aplastische Anämie & PNH e.V. (Germany)
- Asociación de Hemoglobinuria Paroxística Nocturna (Spain)
- Krajowe Forum na rzecz terapii chorób rzadkich ORPHAN (Poland)
- Another Life (Russia)