PNH Support is a charity that supports people affected by Paroxysmal Nocturnal Haemoglobinuria (PNH). The charity provides information and peer to peer support, brings people together, advocates on their behalf and holds a biennial family conference.

Only about 50 people in a million have PNH so the medical profession understandably don't always think of it when seeing a patient with often quite vague symptoms. 

Symptoms can be troublesome even on treatment so more research is needed to find ways of improving quality of life.