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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£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.

  • Tue, June 22 2021, 10:15 AM : Plenty of workshops on #publicinvolvement in #HTA eg. low & middle income countries in Brazil, South Africa, Indonesia & Nigeria. Learning from others and improving current models #HTAi2021VirtualAM
  • Sat, June 19 2021, 10:07 AM : RT @AlineSvSilva: Please, join us at our Panel on Wednesday, 18:15-19:30 UTC. We will reinforce the need to evaluate #PPI in #HTA, share di…
  • Wed, June 9 2021, 2:04 PM : RT @cmlnet: What can patient organisations do? ▶️Provide data ▶️Support patient registries ▶️Put pressure on governments to provide access…
  • Wed, June 9 2021, 10:02 AM : Join us at today’s @EHA_Hematology Patient Joint Symposium session on Fair Pricing of orphan medicines at 1.30pm BST to hear multi-stakeholder perspectives including ours! #EHA2021 #nothingaboutuswithoutus https://t.co/RlqCQqlB1g