PNH Support

Living Well with Aplastic Anaemia – 24th February, 6pm
2025-02-24 18:00 - 19:00 (Europe/London) | Herts, SG8 6DF
Our charity partners The Aplastic Anaemia Trust are hosting a webinar and you are invited to join.

This webinar focused on living well with Aplastic Anaemia. This session will offer practical strategies for cultivating resilience and well-being while navigating the emotional and psychological challenges of an Aplastic Anaemia diagnosis.

Sign up here.

Webinar: Self Confidence and Advocacy - 20 February 2025
2025-02-20 12:00 - 13:00 | Herts, SG8 6DF
This webinar on 20 February 2025 from 12pm to 1pm is designed to help you find the confidence to advocate for yourself or your loved one, and the words when you need them. We will discuss strategies that help you relax in conversations or email interactions, pausing to get across what you wish to say in a courteous but convincing and effective manner.
Register here

Coffee and Cake In Support of PNH Support and the AAT
2025-02-15 10:30 - 13:00 | St James Church Southam
Join a coffee and cake morning with a variety of stalls including a tombola – cash only! Raising money for PNH Support and the Aplastic Anaemia Trust.
Venue: St James’ Church, 74D Coventry St, Southam CV47 0EA
Time: 10.30am to 1pm
https://stjames-southam.co.uk/

Mindfulness for Stress - Online 8 Week Course - starts 13 Feb 2025 - 6.30pm to 8.30pm
2025-02-13 18:30 - 20:30 | Herts, SG8 6DF
Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member), this course is designed to help you to deal with the emotional burden of living with these conditions.

We can’t always choose what happens to us in life, but we can pause to choose how we wish to respond.
It sounds so simple… just press the pause button then calmly decide how to respond in a measured way to the problem, what to do, what to say, how to say it.
We all know pausing isn’t simple. Thoughts, emotions, and physical sensations in our bodies are very powerful. So quickly we can find ourselves swept away in a torrent of fears, worries, uncertainty, despair, anger, irritation, guilt, frustration…. Often prompting us to act in ways that just add to the problem.

There are creative and imaginative ways of settling the busyness of our minds to find the clear space to choose how we want to respond to whatever life brings us, in our everyday or when going through particularly stressful times, and one way is through Mindfulness.
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.
Session dates:

Thursday 13th February – 6.30pm-8.30pm
Thursday 20th February – 6.30pm-8.30pm
Thursday 27th February – 6.30pm-8.30pm
Thursday 6th March – 6.30pm-8.30pm
Thursday 13th March – 6.30pm-8.30pm
Thursday 20th March – 6.30pm-8.30pm
Thursday 27th March – 6.30pm-8.30pm
Thursday 3rd April – 6.30pm-8.30pm

For more information or to register see here

Managing Stress and Uncertainty Online 6 Week Course - starts 12 Feb 2025 - 6pm to 7.30pm
2025-02-12 18:00 - 19:30 | Herts, SG8 6DF
Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member), this course is designed to help you to deal with the emotional burden of living with these conditions.

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.

Session dates

Wednesday 12th February 2025 at 6pm
Wednesday 19th February 2025 at 6pm
Wednesday 26th February 2025 at 6pm
Wednesday 5th March 2025 at 6pm
Wednesday 12th March 2025 at 6pm
Wednesday 19th March 2025 at 6pm

For more information or to register see here

Taking Tablets Webinar - 8 February 2025 - 10am to 11.30am
2025-02-08 10:00 - 11:30 | Herts, SG8 6DF
Now that there are PNH treatments available which are in tablet form (danicopan and iptacopan), join us to hear some advice and tips about taking tablets regularly from a patient as well as the PNH National Service who can answer any questions relating to PNH tablet treatment

10am – 10.45am – presentation
10.45am to 11.00am – Q&A
11.00am to 11.30am – general chat for patients/carers

To register please email us at contact@pnhuk.org

Parent and Carer Webinars
2025-01-30 12:00 - 13:00 | Herts, SG8 6DF
This suite of webinars is designed to help parents/carers and grandparents to manage family dilemmas triggered by bone marrow conditions include PNH.
Content will cover a variety of areas from finding the right words to talk with your child about their diagnosis, to looking after your own emotional wellbeing,…and much much more!

‘How do I talk to my child about their diagnosis?’ – 30th January, 2025 at 12:00pm, sign up here
‘How do I manage times of change in my child’s life’ – 27th February, 2025 at 12:00pm, sign up here
‘What about the rest of my family? How do I support them?’ – 17th March, 2025 at 12:00pm, sign up here
‘How do I keep emotionally healthy? – 28th April 2025 at 12:00pm – sign up here
‘How to use books and other resources to build family resilience’ – 29th May, 2025 at 12:00pm – sign up here

Sign up to the whole series, or just the ones which speak to you

Benefits Webinar - 23 January 2025 - 6pm to 7pm
2025-01-23 18:00 - 19:00 | Herts, SG8 6DF
Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member), this webinar is designed to help you to deal with the financial burden of living with a rare condition.
Benefits Advisor, Robert Mandlestam will deliver this webinar to bring you information about the benefits you may be entitled to if you have or support someone with a rare condition, and advice about how to apply for them.
This webinar will help if you are feeling overwhelmed with the benefit system and need help to navigate it, or if you are just unsure about where to start.
This webinar will include information about the following:

Universal Credit
Personal Independence Payment
Carers Allowance
Employment and Support Allowance
Local support (council tax help and local hardship schemes)

Register here

Managing Stress and Uncertainty Short Online 3 Week Course - starts 20 Jan 2025 - 12pm to 1.30pm
2025-01-20 12:00 - 13:30 | Herts, SG8 6DF
Brought to you as part of the Better Together Alliance Project (of which PNH Support is a member), this course is designed to help you to deal with the emotional burden of living with these conditions. 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.
To join the course, you will need access to the internet to join the 3 Zoom sessions (dates below). Ideally you will also need WhatsApp, to join the discussion group and keep in contact with your tutor. We will add you to the WhatsApp group using the number you provide when you register.

Session datesMonday 20th January 2025 at 12noon to 1.30pmMonday 27th January 2025 at 12noon to 1.30pmMonday 3rd February 2025 at 12noon to 1.30pm

For more info or to register see here

Moving Forward, Living the Life that Matters to You - 8 Week Online Course - starts 16 Jan 2025
2025-01-16 18:30 - 20:30 | Herts, SG8 6DF
Co-created by members of the 6 Better Together charities including PNH Support, this course is designed to help you move beyond diagnosis and treatment, and into the life that matters to you.
What does this course involve? 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.
To join the course, you will need access to the internet to join the 7 Zoom sessions (dates below). Ideally you will also need WhatsApp, to join the discussion group and keep in contact with your tutor.

Session dates:Thursday 16th January 2025 at 6.30pmThursday 23rd January 2025 at 6.30pmThursday 30th January 2025 at 6.30pmThursday 6th February 2025 at 6.30pmThursday 13th February 2025 at 6.30pmThursday 20th February 2025 at 6.30pmThursday 27th February 2025 at 6.30pm

For more information and to register see here

Mindfulness for Stress Taster Session - 16 January 2025 - 6.30pm to 8.30pm
2025-01-16 18:30 - 20:30 | Herts, SG8 6DF
Join experienced and accredited mindfulness teacher Steve Smith in this one-off taster session to learn a little more about what mindfulness is and how it can help you.
We can’t always choose what happens to us in life, but we can pause to choose how we wish to respond.
It sounds so simple… just press the pause button then calmly decide how to respond in a measured way to the problem, what to do, what to say, how to say it.
We all know pausing isn’t simple. Thoughts, emotions, and physical sensations in our bodies are very powerful. So quickly we can find ourselves swept away in a torrent of fears, worries, uncertainty, despair, anger, irritation, guilt, frustration…. Often prompting us to act in ways that just add to the problem.

There are creative and imaginative ways of settling the busyness of our minds to find the clear space to choose how we want to respond to whatever life brings us, in our everyday or when going through particularly stressful times, and one way is through Mindfulness.
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.

For more information and to register, see here

East Anglia Patient and Family Christmas Lunch - 7 December 2024
2024-12-07 12:30 - 14:30 | Herts, SG8 6DF
Join PNH patients and family members for a relaxed Christmas lunch. Cost and venue to be confirmed.

London PNH Patient & Family Meeting - Saturday 7 December 2024
2024-12-07 11:00 - 12:30 | Herts, SG8 6DF
Join other PNH patients and family members face-to-face at an informal meeting over coffee.Where: Atrium Cafe (ground floor), National Theatre, London, SE1 9PX. For more information on getting here, please see here.Time: 11am to 12.30pmDate: Saturday 7 December 2024All welcomePlease email contact@pnhuk.org with any quesitons.
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PNH Patient/Family online meeting - 9 November 2024
2024-11-09 10:30 - 12:00 | Herts, SG8 6DF
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 9 November 2024
Time: 10.30am to 12pm

Please email contact@pnhuk.org for the Zoom details. Please also let us know if you need help using Zoom

Moving Forward - Living the Life that Matters to you - Online Course - from 4 November
2024-11-04 12:00 - 13:30 | Herts, SG8 6DF
If you’re living with PNH or you’re supporting a close family member, it can be challenging to think about how to move forward following significant treatment, or when treatment is life-long. Co-created by members of the 6 charities listed below, this online course is designed to help you move beyond diagnosis and treatment, and into the life that matters to you.

Zoom session dates and timesMonday 4th November 2024, 12pm – 1.30pmMonday 11th November 2024, 12pm – 1.30pmMonday 18th November 2024, 12pm – 1.30pmMonday 25th November 2024, 12pm – 1.30pmMonday 2nd December 2024, 12pm – 1.30pmMonday 9th December 2024, 12pm – 1.30pmMonday 16th December 2024, 12pm – 1.30pm

For more information and to register click here

This course is part of the Better Together project funded by the National Lottery Community Fund.

18 to 30's PNH Patient Meeting (London) - 26 October 2024
2024-10-26 16:00 - 18:00 | Herts, SG8 6DF
A fellow PNH patient and PNH Support UK member is hosting an informal meet up for younger PNH patients (approx 18 to approx 30 years)!
Date: Saturday, 26th of October 2024Time: 4-6 pm.Venue: National Theatre Cafe (Ground floor) on the South Bank in London, SE1 9PX – nearest station is Waterloo (train and tube) – If you have a question or want more information please email us on contact@pnhuk.org.

Community Coffee Afternoons - 12 October 2024 - 2pm to 4pm
2024-10-12 14:00 - 16:00 | Herts, SG8 6DF
Sick of always having to explain your condition? Join others living with rare haematological conditions from our “Better Together” project partner charities (listed below) for a cuppa on Saturday 12th October in Edinburgh, London, Birmingham or Leeds and chat with other people affected by rare conditions affecting the blood.
Venues:
London -Basement Bar, Drake and Morgans, 6 Pancras Square, London N1C 4AG
Birmingham – The Exchange, 3 Centenary Square, Birmingham B1 2DR
Leeds – Banyan Bar, 2 City Square, Leeds LS1 2ES
Edinburgh -The Towpath Cafe, Upstairs @ Biketrax, 2 Fountainbridge Square, Edinburgh, EH3 9QB

Our partner charities and funder:

Managing Stress and Uncertainty Online 6 Week Course - 26 September 2024
2024-09-26 09:00 - 11:30 | Herts, SG8 6DF
Managing Stress and Uncertainty Online 6 Week Course

This course is made available to our members through the National Lottery funded project called “Better Together” and it is part of the emotional wellbeing offering which is part of this project.
“I became so much more confident…you feel that you are valid and it is normal to feel in a certain way.” – attendee on past course
This 6 week course starting on 26th September from 9am to 11.30am, will help you learn techniques to help you face the challenges of living with a rare condition.
For more information and to register click here: https://www.theaat.org.uk/…/managing-stress-and…

Mindfulness 8 Week Online Course - starts 10 September 2024
2024-09-10 10:00 - 12:00 | Herts, SG8 6DF
Mindfulness for Stress Online Course

This course is offered as part of a National Lottery funded project called “Better Together” as part of the emotional wellbeing support offering,
“It has helped me to look at things in a different way, to sleep better and to stress less.” – attendee on past course
Learn how to find the clear space in your mind to choose how you want to respond to whatever life brings. Join Psychologist Steven Smith for this 8 week Mindfulness for Stress Course, starting on 10th September.
Not sure if this course for you? Join the taster session on 23rd July.

To find out more and to register click here: http://www.theaat.org.uk/…/mindfulness-for-stress…

East Anglia Patient and Family Meeting - Saturday 7 September
2024-09-07 10:30 - 12:00 | Herts, SG8 6DF
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.
The event will be held at Bury Lane Farm Shop café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF
Time: 10.30am to 12pm

PNH Support Annual General Meeting for members - 17 August 2024
2024-08-17 10:00 - 11:30 | Herts, SG8 6DF
PNH Support’s AGM will be held on Saturday 17 August 2024 at 10am via Zoom. We are required by our constitution to have this meeting at which we present the annual report and accounts which are then submitted to the Charities Commission. Only official members of PNH Support are entitled to attend the AGM.
Membership is free and means we can contact you direct about news, events and opportunities. To be a member you have to have signed up through our membership form and provided us with some details we have to collect from you here: https://pnhuk.org/about-pnh-support/membership/.
If you are a PNH patient/carer and are not currently a member of PNH Support and want to attend the AGM, just sign up using the link above. We will be sending out the papers and Zoom link for the AGM to members in due course. Please email contact@pnhuk.org with any questions or if you are not sure whether you are a member or not.

Mindfulness Taster Session - 23 July 2024
2024-07-23 10:00 - 11:30 | Herts, SG8 6DF
Is mindfulness for you? Join Psychologist Steven Smith for this taster session of the “Mindfulness for Stress 8 week online course which is coming up in September (details still being finalised)
“I feel more in control of what my illness throws at me” – attendee on previous Mindfulness for Stress course.

To register please click here

Community Coffee Afternoons - 20 July - 2pm to 4pm
2024-07-20 14:00 - 16:00 | Herts, SG8 6DF
Sick of always having to explain your condition? Join others living with rare haematological conditions from our “Better Together” project partner charities (listed below) for a cuppa on Saturday 20th July in Edinburgh, London, Birmingham or Leeds and chat with other people affected by rare conditions affecting the blood.
Venues and sign up links:
London – Basement Bar, Drake and Morgans, 6 Pancras Square, London N1C 4AG
Birmingham – The Exchange, 3 Centenary Square, Birmingham B1 2DR
Leeds – Banyan Bar, 2 City Square, Leeds LS1 2ES
Edinburgh -The Towpath Cafe, Upstairs @ Biketrax, 2 Fountainbridge Square, Edinburgh, EH3 9QB

Our partner charities and funder:

Webinar: Family Life Cycles, Times of Transition in the Context of Illness
2024-06-27 12:00 - 13:00 | Herts, SG8 6DF
Family Life Cycles, Times of Transition in the Context of Illness Webinar
27th June 12pm to 1pm

Transition points in families, such as children becoming more independent can leave the family in a state of uncertainty and worry, especially when you have to navigate a serious health condition. Life cycle changes are inevitable. Being prepared for them is not and they affect all of us differently. We are bringing you this webinar hosted by family therapist Amy Beadle, to think about the challenges of life cycle changes in the context of illness.

REGISTER HERE
All Emotional Wellbeing Support events supported by the National Lottery Community Fund are here

Moving Forward 7 Week Online Course
2024-06-17 13:00 - 14:30 | Herts, SG8 6DF
Moving Forward 7 Week Online Course

Starting 17th June at 1pm-2.30pm

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 living with PNH – to help you overcome these hurdles and thrive in the ways you wish.

SESSION DATES AND TIMESMonday 17th June 2024, 1pm – 2.30pmMonday 24th June 2024, 1pm – 2.30pmMonday 1st July 2024, 1pm – 2.30pmMonday 8th July 2024, 1pm – 2.30pmMonday 15th July 2024, 1pm – 2.30pmMonday 22nd July 2024, 1pm – 2.30pmMonday 29th July 2024, 1pm – 2.30pm

FOR MORE INFORMATION AND TO REGISTERhttps://www.theaat.org.uk/…/moving-forward-living-the…

Managing Stress and Uncertainty Online 6 Week Course
2024-06-11 09:30 - 11:00 | Herts, SG8 6DF
Managing Stress and Uncertainty Online 6 Week Course

This is a 6 week online course starting during the day on 11th June
This course will help you learn techniques to help you face the challenges of living with PNH.
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.

SESSION DATES AND TIMESTuesday 11th June, 9.30-11amTuesday 18th June, 9.30-11amTuesday 25th June 9.30-11amTuesday 2nd July, 9.30-11amTuesday 9th July, 9.30-11amTuesday 16th July, 9.30-11am

FOR MORE INFORMATION AND TO REGISTER CLICK HERE

All Emotional Wellbeing Support events supported by the National Lottery Community Fund are here

Managing Stress and Uncertainty Online 6 Week Evening Course
2024-06-03 18:00 - 19:30 | Herts, SG8 6DF
Managing Stress and Uncertainty Course

This is a 6 week online evening course starting 3rd June

This course will help you learn techniques to help you face the challenges of living with PNH.
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.

Session dates and times:Monday 3rd June 2024 – 6pm – 7.30pmMonday 10th June 2024 – 6pm – 7.30pmMonday 17th June 2024 – 6pm – 7.30pmMonday 24th June 2024 – 6pm – 7.30pmMonday 1st July 2024 – 6pm – 7.30pmMonday 8th July 2024 – 6pm – 7.30pm

TO FIND OUT MORE OR REGISTER CLICK HERE

East Anglia Patient & Family Meeting - 11 May 2024 via Zoom
2024-05-11 10:30 - 12:00 | Herts, SG8 6DF
Join PNH patients and family members online for an informal chat. Bring your own refreshments!
Zoom meeting details: email contact@pnhuk.org

Moving Forward - Free Online Course - starts 2 May
2024-05-02 18:30 - 20:00 | Herts, SG8 6DF
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 that matters to you.

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 including PNH – to help you overcome these hurdles and thrive in the ways you wish.

For more information and to register see here.

London PNH Patient and Family Meeting - Saturday 13 April 2024 (note change of venue)
2024-04-13 11:00 - 12:30 | Herts, SG8 6DF
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 at the Hayward Gallery)
Time: 11am to 12.30pm
Date: Saturday 13 April 2024
All welcome
Please email contact@pnhuk.org with any quesitons.
