The
Global PNH Patient Registry, hosted by the
National Organization for Rare Disorders (NORD) and owned by the
Aplastic Anemia and MDS International Foundation (AAMDSIF), is collating information about PNH patients worldwide. The data includes information about socio-demographics, medical and diagnostic details, treatment and disease progression, management of care, and quality of life.
The data will be used to track the course of the disease over time and for clinical trial recruitment.
Anyone who has been diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) can participate. If you complete all sections, you'll earn a digital gift card, usable in almost any country, worth the equivalent of $75 USD.
Register for the Global PNH Patient Registry