Blog
ASH conference 2024
January 9th, 2025 by Jacqueline LinnThe Leeds and Kings PNH team attended the American Society of Haematology conference in San Diego in December 2024. The International PNH interest group symposium was well attended, with presentations from members of the UK team. Presentations by the UK PNH team included: Paper 33: Dynamics of oligoclonal hematopoiesis in severe aplastic anameia Paper 1323…
Read More...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...