We have listed below information and links we think it is important for newly diagnosed patients to know
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Videos explaining PNH
Watch this short video explaining what PNH is or this video on the PNH National Service’s website.
Patient Journeys
Listen to episodes 1, 4, 5 & 6 of the Rare Voices podcast featuring Jovi or Virginia who live with PNH.
Patient Safety Card
If you are being treated with a complement inhibitor medication e.g. eculizumab, ravulizumab or pegcetacoplan, danicopan, crovalimab or iptacopan 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.
PNH and Meningitis Webinar
Watch this video about PNH and meningococcal infection including vaccination, signs and symptoms (including hearing from a PNH patient with experience of it).
Managing Fatigue Webinar
Watch this informative video with tips and tools for managing fatigue.
PNH National Service Leeds Contact details:
Phone: 0113 2068625 (weekdays)
After hours on call mobile: 07920535918
E-mail: pnh.leeds@nhs.net
PNH National Service London Contact details:
Direct line (during working hours) : +44 (0) 20 3299 3520 | Pager: KH7684.
After hours: Kings College London switchboard: +44 (0)20 3299 9000 and ask for the on-call haematologist
Email: kch-tr.kingspnh@nhs.net
Blood test glossary
This glossary explains the meaning of blood test results
Rare Patient Passport
Complete the online form with your details so you have it to hand to show any medical professionals you may see in any hospital (who may not have access to your medical notes)