Maria Piggin's blog posts
Patient voices Inaugural PNH Patient and Family Conference 2016
I live with the ultra rare bone marrow disorder paroxysmal nocturnal haemoglobinuria (PNH). Between 1 and 9 people per million have PNH. In 2015, I formed a support charity (PNH Support) for patients, their families and carers living with this disease in England, Wales and Northern Ireland. On 25 June 2016, we are holding our first event, a one day conference in London for patients and their families to hear from national experts about recent developments and meet others to share experiences.