Below are some resources about, or related to, PNH:
Listen to all 6 episodes of the Rare Voices podcast where two people living with PNH (Jovi and Virginia) and others with bone marrow related conditions talk about what its like to live with or care for someone living with a rare condition. Episodes 1, 4, 5 & 6 feature Jovi or Virginia.
Session recording of “Taking Tablets” on 8 February 2025
Session recording on Rare Disease Day 2024 PNH Update – 29 February 2024
Rare Voices Report Presentation of Headline Findings – 9 December 2023
Webinar on Connection between Aplastic Anaemia & PNH – March 2023
Webinar on Treatment of PNH – February 2023
Webinar on PNH and Meningococcal Disease (5 November 2022)
Video: “PNH: When blood machinery goes wrong” (Nature)
Webinar on Life after Bone Marrow Transplantation for Aplastic Anaemia and PNH – May 2023
Webinar on Pregnancy for Aplastic Anaemia and PNH – May 2023
Webinar on “What effect does AA& PNH have on my life?” – April 2023
Video: PNH Explainer Video (PNH National Service)
Webinar on Treatment of PNH – December 2022
Webinar on Understanding PNH – 14 December 2022
Webinar on Making the Most of your Energy – taking control of fatigue (5 November 2022)