Our Events

If you're living with a condition and being supported by any of the charities listed below, whether you have it yourself or you're supporting a close family member, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project, this course is designed to help you to deal with […]

Register for a webinar on"Everyday Mindfulness" on Thursday 16th November, 17.30 - 18.30 delivered by Lesley Howells, Clinical Psychologist. Every day mindfulness strategies to quieten the busyness of our minds and help us live a more meaningful life despite the challenges we face. This webinar is also a taster for the eight week Mindfulness Courses […]

The East Anglia PNH support group are having a Christmas lunch at 12.30pm on Saturday 2nd December 2023. It will be at The Tickell Arms, North Road, Whittlesford, Cambridge, CB22 4NZ. Please see their website for information about Christmas meals. All Patients & their family are more than welcome to join us If you would […]

One of our members (Victoria) has offered to host a London face-to-face patient and family meeting on Saturday 2 December 2023 from 11am at the Hayward Gallery cafe located on the first floor of the Hayward Gallery building in central London. It is a few minutes walk from Waterloo station and is well connected by […]

The Rare Voices report (launched on 14 November 2023) sets out the findings from the first ever national community survey into rare bone marrow conditions.  This survey was a collaborative effort between the following charities: PNH Support The Aplastic Anaemia Trust Fanconi Hope (Fanconi Anaemia) DC Action (Dyskeratosis Congenita and Telomere Biology Disorders) SDS UK (Schwachman […]