PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518). The organisation was started in 2015 by patients living with paroxysmal nocturnal haemoglobinuria (PNH) 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.
PNH is an ultra rare disease and it is very easy for someone 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.
Our organisation comprises three volunteer trustees as well as our members made up of patients and family members. We arrange regional patient support meetings, produce a 6 monthly newsletter, hold a biennial patient and family conference, moderate a closed Facebook page and advocate on behalf of the PNH patient community in England and Wales.
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