COURSE Managing Stress and Living with Uncertainty with Catarina Baptista
2025-05-13 08:00 - 2025-06-17 17:00 (Europe/London)
This course will help you learn techniques to help you face the challenges of living with bone marrow failure. There are six weekly sessions each with 60 minutes of psycho-educational content and 30 minutes of meditation/reflective practice. The course uses ACT, an evidence-based therapeutic approach, that people say makes immediate sense. The strategies are straightforward and easy to build into your day.

Topics include understanding stress and uncertainty, learning how to respond to difficult thoughts and emotions, how to use everyday mindfulness, and how to live life in the way that matters to you despite. stress and uncertainty.

Register here.

PNH Patient/Family Online Meeting - Saturday 17 May 2025 - 10.30am to 12pm
2025-05-17 10:30 - 12:00
Join other PNH patients/ family members for an informal chat via Zoom. Please note that no medical advice will be provided but signposting can be provided if needed. All welcome!

Date: Saturday 17 May 2025
Time: 10.30am to 12pm

Email contact@pnhuk.org for the Zoom details. If you need assistance using Zoom please also get in touch.

How to use books and other resources to build family resilience
2025-05-29 12:00 - 13:00
Themes covered in this webinar will include:

Recommendations of books and other resources (e.g. youtube clips) that help you to communicate with your children, help them manage tricky emotions and build overall family resilience.
How to use books and other resources
Recommendations of social media and websites that your child and teen can access safely.

Sign up here

COURSE - Mindfulness for Stress
2025-06-04 08:00 - 2025-07-23 17:00
Mindfulness helps us find an extra energizing dimension to our lives, even when we feel overwhelmed, it helps us create clarifying and compassionate pauses for our minds to settle so moment by moment we can choose to be the person that matters to us.
During this free 8-week course you will;

Learn how to find the clear space in your mind to choose how you want to respond to whatever life brings
Learn tools to help you be the person that matters to you even during challenging times
Find ways to press the pause button in your mind and quieten the busyness of everyday life

Click here for more details and to book.

What about the rest of my family – how do I support them?
2025-06-12 12:00 - 13:00
Themes in this webinar will include:

How do I build family resilience?
How do I deal with challenging behaviour in my other children? For example, jealousy, sleep problems, school refusal.
How do I keep a family routine?

For more information and to register, click here

COURSE - Moving Forward, Living the life that matters to you
2025-07-07 08:00 - 2025-08-18 17:00
Living the life that matters to us is key to everyone’s emotional wellbeing.

But following significant treatment or when treatment is life long, this isn’t always easy. People are faced with physical, psychological and practical hurdles that at first feel unsurmountable.

This course is designed – with the help of people with bone marrow conditions – to help you overcome these hurdles and thrive in the ways you wish. Learn tools to help you be the person that matters to you even during challenging times.

For further information and to sign up click here

COURSE (short) - Managing Stress and Uncertainty with Maria Mullan
2025-08-14 18:30 - 2025-08-28 20:00
This shortened course will help you learn techniques to help you face the challenges of living with bone marrow failure. There are three weekly sessions each with 60 minutes of psycho-educational content and 30 minutes of meditation/reflective practice. The course uses ACT, an evidence-based therapeutic approach, that people say makes immediate sense. The strategies are straightforward and easy to build into your day.
Topics include understanding stress and uncertainty, learning how to respond to difficult thoughts and emotions, how to use everyday mindfulness, and how to live life in the way that matters to you despite. stress and uncertainty.

For more information and to join, click here.

MEETING: East Anglia Group Patient and Family Face-to-Face Meeting
2025-09-06 10:30 - 12:00 | Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF, SG8 6DF, United Kingdom
Join PNH patients and family members for an informal chat over coffee and cake. Please note that you will need to pay for your own refreshments.

Please contact contact@pnhuk.org if you have any questions

MEETING - London Patient and Family Face-to-Face meeting
2025-09-13 11:00 - 12:30 | The Atrium Café, National Theatre, London, SE1 9PX
This is an informal Saturday morning catch-up for all members of our PNH community. Newcomers and regulars are most welcome. The venue information can be found here.

Please email contact@pnhuk.org with any questions.

East Anglia Group Patient Christmas Lunch
2025-12-06 12:30 - 15:00 | The Old Bull, 56 High Street, Royston, Herts. SG8 9AW, The Old Bull, 56 High Street, Royston, Hertfordshire, SG8 9AW, United Kingdom
Join PNH patients and family members for a relaxed Christmas lunch. Pre-booking required and cost to be confirmed – more details to follow.
Please contact contact@pnhuk.org if you have any questions in the meantime.

MEETING: East Anglia Group Patient and Family Face-to-Face Meeting
2026-03-14 10:30 - 12:00 | Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF, SG8 6DF, United Kingdom
Join PNH patients and family members for an informal chat over coffee and cake. Please note that you will need to pay for your own refreshments.

Please contact contact@pnhuk.org if you have any questions.

East Anglia Group Patient and Family Face-to-Face meeting
2026-09-19 10:30 - 12:00, 2027-03-20 10:30 - 12:00 | Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF, SG8 6DF, United Kingdom
Join PNH patients and family members for an informal chat over coffee and cake. Please note that you will need to pay for your own refreshments.

Online PNH Patient and Family Meeting (Zoom)
2026-11-07 10:30 - 12:00, 2027-05-08 10:30 - 12:00
Join other PNH patients and family members for an informal chat over Zoom. No medical advice will be provided but signposting can be given if required.
Zoom link is given to PNH Support members. Please email us at contact@pnhuk.org
