PNH National Services

Blog

Clinical Team changes 

April 17th, 2025 by Jacqueline Linn

Dr Abraham Varghese has changed roles and has now left the PNH Service. Dr Alex Pike has now completed her PhD and has started in post as a consultant within the PNH Service.  Some patients may remember her as our clinical Research Fellow. We wish Dr Varghese luck in his future endeavours.

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AA-MDS Bone Marrow Failure Summit

March 25th, 2025 by Jacqueline Linn

Dr Griffin and Dr Kulasekararaj presented at the AA-MDS Bone Marrow Failure Summit in Washington on 06/03/25. They presented on the PNH section of the conference.

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ASH conference 2024

January 9th, 2025 by Jacqueline Linn

The 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…

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New PNH Treatments

November 7th, 2024 by Jacqueline Linn

As 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…

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Medical alert keyrings for patients with PNH

October 14th, 2024 by Jacqueline Linn

The 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…

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