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PRESERVATION OF THE UK IN EUROPEAN REFERENCE NETWORKS

Maria Piggin and Sophie Wintrich hold voluntary positions as European Patient Advocacy Groups (ePAGs) in the European Reference Network (ERN) on Rare Hematological Diseases (EuroBloodNet). Maria is the Chair of PNH Supportand Sophie is the CEO of MDS UK, which are...

The Launch of the PNH Global Alliance

As PNH is an ultra rare condition, finding a patient group in your own country is hard enough let alone finding other patient groups around the world to share information, knowledge and experiences. It took a few years to get us together but we are very excited to...