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 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.

 Chair – Maria Piggin – PNH Support

 Secretary – Barry Katsof – Canadian Association of PNH Patients

Treasurer – Angeline Jansen – Stichting AA & PNH Contactgroep


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)
  • 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)