PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518). The organisation was started in 2015 by patients who realised there was a need for an independent, patient led, legal platform through which we could engage with the many stakeholders in our world. These include the NHS, the PNH National Service, homecare providers, pharmaceutical companies developing new treatments, the National Institute for Health and Social Care Excellence and other patient organisations both locally and internationally.
As a result of PNH being a rare disease, it is very easy for a person living with PNH to never meet another person in the same situation. PNH Support values peer-to-peer support and considers it to be an essential and valuable way for people living with PNH (and their families) to share their experiences, support one another and reduce isolation. We wanted to create a community that could engage together with our stakeholders because together we are stronger!
We hope this website provides a place that those who have been living with PNH for some time as well as the newly diagnosed can find reliable and relevant information.
Our organisation comprises of four volunteer trustees as well as our members.
Please see our Membership page for more information.