PNH National Services

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1st IPIG Conference 2023

June 1st, 2023 by Jacqueline Linn

The UK PNH team were pleased to host the First International PNH Interest Group meeting in Harrogate.  A successful 2 day meeting with speakers and attendees worldwide experienced in PNH.  Topics discussed included the history of PNH, current and newer treatments for PNH, and presentations from PNH experience around the world.  

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The National PNH Service Yearly Newsletter 2023

February 14th, 2023 by Jacqueline Linn

Please see the link for our 2023 newsletter. PNH Newsletter 2023 Our newsletter will now come in a yearly installment and going forward, we would like to send the newsletter via email. If you have not already provided us with an email address, please let us know via email or telephone as below. Telephone: 0113…

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PNH Patient and Family Conference – 18th March 2023

February 10th, 2023 by Jacqueline Linn

Due to rail strikes planned for 18th March, we now plan to hold the PNH Patient and Family Conference via Zoom. Date: Saturday 18 March 2023 – 10:00 to 13:00 for more information and to register for this event, please use the link below.  Please register by 15th March 2023. PNH Patient and Family Conference…

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Regeneron 1947 Trial Now Open

January 19th, 2023 by Jacqueline Linn

We are delighted to announce that the Regeneron 1947 trial is now open for Aplastic Anaemia patients. For more information, please contact the service or discuss at your next appointment.

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National Community Survey in Partnership with the bone Marrow Alliance

November 25th, 2022 by Jacqueline Linn

The PNH Support Group and Aplastic anaemia Trust are currently running the first ever National Community Survey of people living in the UK with bone marrow conditions or caring for those with rare bone marrow conditions.  The National Community Survey aims to engage as many people as possible across the UK who are affected by…

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