An intensive two-day conference convening international experts at the forefront of research and treatment of bone marrow failure disease.
The International PNH Interest Group is proud to be a friend of Rare Disease Day 2019.A disease or disorder is defined as rare in Europe when it affects fewer than one in 2,000 people. Rare diseases may affect 30 million European Union citizens. Globally, more than 350 million people live with a rare disease – more than the population of the United States. There are more than 6000 rare diseases. On the whole, 80% of rare diseases are of genetic origin, and are often chronic and life-threatening.
The mission of the International PNH Interest Group is to expand knowledge of paroxysmal nocturnal hemoglobinuria (PNH), its incidence, and prevalence rates, and to consider and recommend optimal care and treatment of patients diagnosed with PNH.