We have listed below information and links we think it is important for newly diagnosed patients to know
.
What this short video explaining what PNH is.
If you are being treated with a complement inhibitor medication e.g. eculizumab, ravulizumab or pegcetacoplan this safety card has important information to be aware of and which you should show to healthcare professionals especially if you have signs of meningococcal infection.
Watch this video about PNH and meningococcal infection including vaccination, signs and symptoms (including hearing from a PNH patient with experience of it).
Watch this informative video with tips and tools for managing fatigue.
Emergency contact numbers:
PNH National Service Leeds:
Tel: 0113 2068625 (weekdays)
After hours on call mobile: 07920535918
E-mail: pnh.leeds@nhs.net
PNH National Service London:
Direct Line (during working hours) : +44 (0) 20 3299 3520 | Pager: KH7684
If after hours: call the Kings College London switchboard on +44 (0)20 3299 9000 and ask for the on-call haematologist
Email: kch-tr.kingspnh@nhs.net