Foundation of the PNH Global Alliance

In June, representatives of international PNH patient organisations met in Amsterdam to found the PNH Global Alliance. In addition to us, the lichterzellen foundation from Germany was represented. Colleagues from Great Britain, the Netherlands, France and Spain were on site, while representatives from Canada and Russia were connected via video telephony. The goals of the Global Alliance include

  • Provide access to PNH drugs for all PNH patients worldwide
  • Advance the research and development of new drugs with the participation of patient advocates
  • To represent the interests of patients in the regulatory and other authorities
  • Promote the healthcare and public awareness of the problems associated with the disease

We consider networking on an international level to be very important and we look forward to being part of this new community. The website is still under construction, you can get a first impression at .


The underlying event was the congress of the European Society for Hematology (EHA), for which we received a free ticket. The PNH Global Alliance had already been contacted by various pharmaceutical companies before the congress, with whom we had discussions, among other things, about planned clinical trials.

In particular in the evenings scientists presented the results of special studies in the so-called poster sessions, for example initial results on a PNH drug that is currently being tested and is to be administered subcutaneously. If you are interested in further information, please contact us.