PNH Support is a membership organisation. Membership is open to all those living with PNH in England, Wales and Northern Ireland, as well as their families and carers. As all members are able to vote, membership provides the opportunity to help shape the direction of PNH Support. Members can also have a say about other decisions which are made about things affecting PNH patients, e.g. NHS services, decisions on guidelines made by the government and other stakeholders e.g. NICE. The patient voice carries a significant amount of weight and PNH Support provides patients, their families and carers with a medium through which their voice can be heard.
Membership is free although from time to time we may ask for help with one of our projects, campaigns or surveys.
Members of PNH Support receive:
– newsletters approximately once every 6 months
– updates and news about PNH Support and relevant issues affecting those living with PNH
-communications from PNH Support about events, meetings and other ways to have a say about issues affecting those living with PNH including opportunities to take part in surveys and interviews.
If you would like to become a member of PNH Support, please complete the form below.