We support patients living with Paroxysmal nocturnal haemoglobinuria (PNH) and their families in England, Wales and Northern Ireland . Our vision is "No PNH patient in England, Wales and Northern Ireland is alone. All are represented and enabled to live to their full potential with PNHi". s an ultra-rare bone marrow failure disease. Our mission is "We provide support through educational resources and advocacy, as well as peer to peer contact." PNH is acquired (which means it is not inherited) and affects 1.3 people per million. Those living with this condition can require life long treatment to address symptoms such as extreme fatigue, breathlessness, pain and sometimes complications such as blood clots and kidney damage.
