Despite the fact that PNH patients who have access to treatment are in an enviable position, the “diagnostic odyssey” which affects rare diseases generally, equally applies to PNH. General Practitioners and haematologists need to be able to recognise a disparate set of symptoms, such as anaemia, stomach and back pain, dysphagia (difficulty swallowing), jaundice, breathlessness, erectile dysfunction, severe fatigue and dark or red coloured urine.