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.

       

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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.

  • Mon, October 12 2020, 6:29 PM : Alexion receives approval to deliver PNH treatment Ultomiris 60% more quickly. Great news for #pnhdisease patients. https://t.co/CJrHH66LsJ
  • Mon, October 5 2020, 8:31 AM : RT @LouiseShackle: Yesterday we talked about the beginning of our journey in PNH as I develop my role in the team starting monday as an ACP…
  • Mon, October 5 2020, 8:30 AM : RT @WECANadvocate: Congrats @EUPATIents for the establishment of the EUPATI Foundation! The community needs EUPATI, and other stakeholders…
  • Wed, September 23 2020, 8:58 AM : Ask a PNH expert webinar coming up on Thursday 24th September: https://t.co/JJuGfQ2NIw #pnhdisease