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Online PNH Patient and Family Conference – Saturday 18 March 2023

March 18 @ 10:00 am - 1:00 pm

Due to the train strike which has been announced for 18 March 2023 and the limited number of patients able to attend in person, we have taken the decision to move to this an online event only (via Zoom).
Our PNH Patient and Family Conference is back co-hosted by PNH Support, PNH Scotland and the PNH National Service.
Venue: You will be provided with the Zoom details after you register

Time: 10am to 1pm

Indicative agenda:
9.30am –  Zoom session opens for people to login.
10.00am – Welcome and introductions from PNH Support/PNH Scotland/PNH National Service
10.15am – Icebreaker to get to know one another (via Zoom break out rooms)
11.00am – Overview of PNH and updates on PNH research and clinical trials –  PNH National Service
11.45am – Q&A
12.00pm – Comfort break
12.05pm – Managing Uncertainty – Lesley Howells (Lead Psychologist, Maggie’s Centre).

Lesley worked as a Clinical Psychologist in the NHS for 18 years before joining Maggie’s. She specialised in working with people juggling the demands of chronic physical health problems such as cancer, diabetes and cystic fibrosis. She is an NHS Accredited Trainer in Advanced Communication, Accredited Mindfulness Teacher and has specialist expertise in the teaching and supervision of NHS Specialist Palliative Care professionals. Since qualifying in 1991 her research and clinical focus has been families, individuals and couples facing life-changing trauma and transitions, primarily those prompted by changes in physical health (e.g. families with cystic fibrosis, diabetes).Before joining Maggie’s in 2014, she was the Clinical Health Psychology Lead for NHS Dumfries and Galloway. Lesley is also working to create a plan for provision of psychological support for the bone marrow failure patient communities as part of the Better Together Project.

12.25 – Q&A

12.40 – Break out room small group discussions on what further support/information is needed by patients/families

1pm- Conference closes

Please register here by 15 March 2023
For any questions email contact@pnhuk.org.


March 18
10:00 am - 1:00 pm