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 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 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.
A Global Community
Although PNH is an ultra-rare disease, you are not alone. The Alliance has been created to bring our global community closer together so that we can collaborate and support one another.