Looking after your mental wellbeing – join the AAT’s Wellbeing Wednesdays!

Maggie's lead psychologist Lesley Howells joins the Aplastic Anaemia Trust (AAT) and their patient community members (including those with PNH) every week, for an interactive and friendly session via Zoom with the focus on mental wellbeing at this very challenging time. Wednesdays from 5pm to 6pm Struggling to cope with the uncertainty? It's all over-whelming? […]

East Anglia PNH Patient and Family Zoom meeting – 12 March 2022

PNH patients and family members are welcome to join the East Anglia Patient and Family Zoom meeting. Date and Time: 10.30am to 12.00pm on Saturday 12th March 2022 Location: Zoom Details: Join PNH patients and family members online for an informal chat. BYO refreshments. All welcome! BYO refreshments.   Please email contact@pnhuk.org for Zoom details.

Navigating the new ‘normal’ with no COVID restrictions – 20 April 2022

How do you feel about returning to 'normal' without COVID restrictions? We are aware that this is a daunting prospect for many of us who have spent many months shielding and who may still be. Join us on Wednesday 20 April 2022, 5.30pm to 6.30pm via Zoom when Philip Alexander, the Lead Psychotherapist from Haemato-oncology at […]

East Anglia Patient and Family Coffee and Cake meeting

Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston,, Herts,

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 crossed that the weather will be good! Please let us know if you plan to attend so that we can confirm numbers to the café. […]

PNH Support Members’ Annual General Meeting – 18 June 2022 – 10am to 12.30pm

Members of PNH Support are welcome to join our AGM to be held virtually on Zoom on 18 June 2022 and vote on the annual report and accounts and any other proposed resolutions. Members will also hear about what activities we have undertaken in the past year ending 31 March 2022 and contribute their thoughts on […]

ERN-EuroBloodNet Webinars for Patients: Risk and Course of COVID-19 in AA/ PNH Patients, Including Vaccination Strategies

The European Reference Network, EuroBloodNet has organised a patient webinar: Risk and Course of COVID-19 in AA and/or PNH Patients, including vaccination strategies. The webinar aims to provide highly specialised and cutting-edge knowledge for patients and their families. It is led by experts in the field of AA and PNH, health professionals and patients representatives. The […]

Sepsis Awareness Webinar hosted by the Aplastic Anaemia Trust – 8 September – 6pm to 7pm

  Sepsis is a serious condition, and can be life-threatening if left untreated. For people with aplastic anaemia and other rare bone marrow failures, the disease itself, and the impact that the treatments have on the immune system mean that people with these conditions are at an increased risk of developing sepsis, and experiencing complications […]

East Anglia Patient and Family Coffee and Cake Meeting – Saturday 17 September 2022

Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston,, Herts,

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 crossed that the weather will be good! Please let us know if you plan to attend so that we can confirm numbers to the café […]

PNH Patient Virtual Meeting: Saturday 5 November 2022 – 10am to 11.30am

PNH Support, PNH Scotland and the PNH National Service invite you to join us on Saturday 5 November 2022, 10am to 11.30am via Zoom Agenda: 10am - PNH and meningitis - Louise Arnold, Advanced Nurse Practitioner - St James's Hospital, Leeds 10.45am - Managing Fatigue - Claire Traub - Specialist Occupational Therapist, Addenbrooke's Hospital, Cambridge […]

EuroBloodNet Webinar Series – on PNH and Aplastic Anaemia – Wednesdays every month at 4.30pm to 6pm from 23 November 2022

The European Reference Network (ERN) -EuroBloodNet Topic on Focus on aplastic anaemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) for patients and their families is coordinated in collaboration with the following patient associations: PNH Support (focused on PNH represented by Maria Piggin, ePAG of the ERN-EuroBloodNet) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester) and Eurordis. It aims to […]

Free