Blog
Parliamentary Round Table Discussion for the National PNH Service
May 8th, 2024 by Jacqueline LinnDr Griffin, Dr Kelly, Dr Lowndes, Louise Arnold, Nicola Houghton and patient support groups attended Parliament on 24th April 2024 for a round table rare diseases discussion chaired by Mr O’Dowd. Baroness Pauline Neville-Jones from the House of Lords was also in attendance. The discussion was surrounding the service’s unique approach to a rare disease…
Read More...The National PNH Service Yearly Newsletter 2024
March 12th, 2024 by Jacqueline LinnPlease see PDF link below to our latest edition of the yearly newsletter. Going forward, we would like to send this to all via email. Please could we ask that you get in touch with the admin team to provide up to date email address. Newsletter 2024
Read More...“Update on PNH” – 29 February 2024 (Rare Diseases Day) – 1pm to 1.45pm via Zoom
February 23rd, 2024 by Jacqueline LinnJoin us for an update on PNH from the PNH National Service to celebrate Rare Disease Day 2024 from 1pm to 1.45pm via Zoom. There will also be a chance to ask your questions. Register to attend using this online form: http://tinyurl.com/4w2858wx You will then be sent the Zoom details – please watch out for…
Read More...Louise Arnold – Advanced Clinical Practitioner
January 15th, 2024 by Jacqueline LinnLouise Arnold (previously Lead CNS for the PNH Service) has recently qualified as an Advanced Clinical Practitioner. Many of you will know Louise in her capacity as a Clinical Nurse Specialist within the PNH service since the service was set up in 2009.
Read More...Spring 2023 Covid-19 Vaccinations
June 2nd, 2023 by Jacqueline LinnFor our patients who are immune suppressed or on anti-complement therapy, you are now eligible for a further Covid-19 vaccination. You are able to book this vaccination via the NHS App or by visiting the NHS website. If you do not have online access, you can call 119 for free. Through the National Booking Service,…
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