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PNH Support

We are a group of patients in England, Wales and Northern Ireland living with the rare disease, paroxysmal nocturnal haemoglobinuria (PNH).  We have formed this charity to support and empower one another (including through the provision of information, advice and advocacy) and to create a platform from which the voice of our community can be heard and accessed by relevant stakeholders.

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More about the charity

PNH is a very rare blood disease where blood cells are vulnerable to be attacked by a particular part of the body’s immune system called "the complement”. The process whereby the red blood cells are destroyed, is called haemolysis and is responsible for many of the symptoms of the disease.

Haemolytic PNH affects between approximately 1 and 9 people in every one million of the population. PNH affects both men and women, all races and all ages. Most patients are diagnosed when they are in their 30’s or 40’s but PNH can develop at any age.

Contact Information

PNH Support
Tel 07810 352555
Registered charity no. 1161518

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Make a Donation Ltd. Registered in England & Wales. Company No. 07853867. Registered Office: 3 Manor Courtyard, Hughenden Avenue, High Wycombe, Buckinghamshire HP13 5RE