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East Anglia Face-to- Face Patient and Family Meeting – 9 March 2024
An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome. We have booked outside seating, so fingers […]
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Super Rare Campaign 2024 -1 February to 31 March 2024
Welcome to Super Rare! Super Rare is all about being rare, but not alone. Our charities designed this campaign together to help people affected by Super Rare conditions to come […]
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Webinar on Wellbeing for Carers – 11 April – 5pm to 6pm
A challenge faced by many who care for someone living with PNH, is taking time to care for themselves. This webinar offers parents and carers, (who often do not take […]
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London PNH Patient and Family Meeting – Saturday 13 April 2024 (note change of venue)
Join other PNH patients and family members face-to-face at an informal meeting over coffee. Where: Atrium Cafe, National Theatre, London, SE1 9PX (this is very close to the previous venue […]
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Moving Forward – Free Online Course – starts 2 May
Moving Forward Course: Living the life that matters to you This free online 7 week course is designed to help you move beyond diagnosis and treatment, and into the life […]
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