About

PNH Support is a patient led charitable incorporated organisation registered in England and Wales (no 1161518) which supports patients and their families here and in Northern Ireland living with the rare disease, paroxysmal nocturnal haemoglobinuria (PNH).  We support patients and their family members including through the provision of information, advice and advocacy in order that the voice of our community can be heard and accessed by relevant stakeholders.

     

£60.00 raised by 4 supporters

£60.00 donated

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PNH Support from PNH Support

PNH Support is a patient led charitable incorporated organisation registered in England and Wales (no 1161518) which supports patients and their families here and in Northern Ireland living with the rare disease, paroxysmal nocturnal haemoglobinuria (PNH).  We support patients and their family members including through the provision of information, advice and advocacy in order that the voice of our community can be heard and accessed by relevant stakeholders.

Twitter

For further information visit the twitter feed.

  • Sat, September 4 2021, 6:27 PM : Great to finally be able to have a face to face get together today (outside) for the PNH Support East Anglia group. You can find out more about our events by joining the the PNH Support (England, Wales and N.I) Facebook group: https://t.co/W7avG5VB5i
  • Sat, September 4 2021, 6:20 PM : RT @AustinKulasekar: @OncLive @KingsCollegeLon @EU_Commission Definitely a step change for the paediatric population #Pnh @PNHSupport @leed…
  • Thu, August 26 2021, 1:14 PM : Please tell us about your missed, late or incorrect medical diagnosis to help improve research. UK wide #publicinvolvement @GeneticAll_UK https://t.co/lq4eyKbu6Y
  • Wed, August 18 2021, 10:33 PM : RT @aamdsif: PNH Diagnosis, Treatment and Prognosis Did you miss this session from the Virtual Conference in Seattle? Check out this sess…