Blog
New PNH Treatments
November 7th, 2024 by Jacqueline LinnAs we progress with PNH treatment options for patients, following successful clinical trials, we are pleased that now approved by NICE for patients in England and Wales Iptacopan and Danicopan are now approved. Iptacopan is an oral factor B inhibitor taken twice a day (monotherapy) and Danicopan is an add on oral factor D inhibitor…
Read More...Medical alert keyrings for patients with PNH
October 14th, 2024 by Jacqueline LinnThe National PNH Service have commissioned medical alert keyrings for patients with PNH (Paroxysmal Nocturnal Haemoglobinuria). The purpose of these keyrings is to help identify patients who have a diagnosis of PNH to other clinical teams involved in their care to ensure they receive safe and appropriate treatment. There are two keyrings. One will be…
Read More...Global PNH Awareness Day 12/10/24
October 11th, 2024 by Jacqueline LinnHighlighting PNH Global Awareness Day with a Rare Communities – coffee and chat event in Leeds 12/10/24 – 2pm until 4pm. Awareness Poster 12.10.24
Read More...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
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