Blog
Regeneron 1947 Trial Now Open
January 19th, 2023 by Jacqueline LinnWe 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.
Read More...National Community Survey in Partnership with the bone Marrow Alliance
November 25th, 2022 by Jacqueline LinnThe 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…
Read More...Save-the-Date – Saturday 18 March 2023 – PNH Patient and Family Conference
November 11th, 2022 by Jacqueline LinnExciting news! Our PNH patient/family conference is back co-hosted by PNH Support, PNH Scotland and the PNH National Service! It will be great to see everyone face-to-face after such a long time however those who can’t join in-person will be able to join virtually. We have just secured a venue in Leeds. Details will be…
Read More...Biocryst Clinical Trial now open
October 31st, 2022 by Jacqueline LinnWe are delighted to be open for the Biocryst 9930-202 clinical trial for patients with extra-vascular haemolysis on a C5 inhibitor.
Read More...PNH Support, PNH Scotland and the PNH National Service: A Patient Meeting.
October 17th, 2022 by Jacqueline LinnAs a group we welcome you, family and friends to join us for a virtual patient meeting on Saturday 5th November 10am-11.30am on Zoom. The meeting will include: Update of information around PNH and the link to meningococcal infection due to some therapies used in treatment of PNH with Louise Arnold Nurse in the PNH…
Read More...