Managing Stress and Uncertainty Short Online 3 Week Course - starts 20 Jan 2025 - 12pm to 1.30pm
2025-01-20 12:00 - 13:30 (Europe/London)
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

Benefits Webinar - 23 January 2025 - 6pm to 7pm
2025-01-23 18:00 - 19:00
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

Parent and Carer Webinars
2025-01-30 12:00 - 13:00
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

Taking Tablets Webinar - 8 February 2025 - 10am to 11.30am
2025-02-08 10:00 - 11:30
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

Managing Stress and Uncertainty Online 6 Week Course - starts 12 Feb 2025 - 6pm to 7.30pm
2025-02-12 18:00 - 19:30
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

Mindfulness for Stress - Online 8 Week Course - starts 13 Feb 2025 - 6.30pm to 8.30pm
2025-02-13 18:30 - 20:30
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

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/

Webinar: Self Confidence and Advocacy - 20 February 2025
2025-02-20 12:00 - 13:00
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

Living Well with Aplastic Anaemia – 24th February, 6pm
2025-02-24 18:00 - 19:00
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.

Emotional Wellbeing
2025-02-27 12:00 - 13:00
How do I manage times of change in my child’s life? This webinar will help you and your child cope with the practical and emotional demands of life transition and find balance between keeping your child safe and helping them become more independent.
https://www.theaat.org.uk/Event/webinar-how-do-i-manage-times-of-change-in-my-childs-life
inar-how-do-i-manage-times-of-change-in-my-childs-life

East London Epping Forest Super Rare Walk 2025 - 1 March 2025
2025-03-01 11:00 - 15:30
On Saturday 1 March 2025, we will be coming together to walk in Epping Forest in support of the Super Rare campaign and PNH Support. This year is the 10 year anniversary of PNH Support which is run voluntarily by patients, for patients!
We’ll walk to High Beach in Epping Forest for lunch where you can opt to either taxi back to Chingford station (or wherever your car is parked) or join us for the walk back. Dogs and children are welcome. If you have very young kids, you could join us at a car park half-way to the pub (or at the pub) for a short walk option.
We will meet at 11am at Bury Road Car Park, 5 minutes walk from Chingford Station (Station Road, Chingford, Greater London E4 6AL) and where we will start the walk and arrive at High Beach in Epping Forest for lunch. After lunch we’ll walk back to Bury Road Car Park.
There are free public toilets at High Beach.
Walk
The route for the walk is from Chingford to High Beach in Epping Forest and is approximately 1 to 1.5 hour’s walk each way (4.1 km or 2.5 miles each way) but this will of course depend on how fast you walk. This map is an approximation but indicates the route we will take https://maps.app.goo.gl/RKayv3CMF5ZtbsMC8

The route is quite flat with a medium uphill gradient as we approach High Beach. It can get muddy so sensible footwear are recommended.
After lunch we will walk back to Chingford station but if you only wanted to do a short walk, you could take a 10 minute taxi back to Chingford station or your car.
If you walk there and back and stop for lunch, we estimate we will be back at Chingford at approximately 3 to 3.30pm.
Donate
Please make a donation on our JustGiving page to support people living with PNH.
Food
At High Beach (the destination for the walk and where we will stop for lunch) there is the following options for food:

A gastropub: The Kings Oak Hotel Paul’s Nursery Road, High Beach, Essex. IG10 4AE with a wide variety of food options and both indoor and outdoor seating. Let us know if you want to eat here by completing the form below so we can book a table (probably outside). The pub is not dog friendly so those with furry friends will need to eat outside.

The Oyster Shack & Seafood Bar next to the pub which doesn’t take reservations and has a few indoor tables and outdoor seating. Serves hot and cold seafood.

The Kings Oak Cafe is also next the pub, is a takeaway cafe and has outdoor seating. They sell both cold and hot drinks, sandwiches and burgers (including vegetarian and vegan), hot dogs and chips.

Travelling by Train:

Chingford Station, Station Road, Chingford, E4 6AL. This station is at the end of the “Weaver Line” on the Overground (map here). The walk starts 5 minutes walk from Chingford Station at the Bury Road Car Park.

Parking
Chingford (where the walk starts)

Bury Road Car Park, Parking lot, 4 Bury Rd, London E4 7QJ (run by Horizon Parking Ltd for the City of London Corporation, Epping Forest) – 4 mins walk from Chingford Station and right at the start of the walk. Pay by RingGo app or call 0207 7110 0000 Tariff:

Up to an hour £1.50

Up to 2 hours £2.50

Up to 4 hours £4

Up to 6 hours £6

Chingford Golf Course Car Park, Bury Rd, London E4 6AR (next to the Bury Road Car Park and 5 mins walk from Chingford Station). It has the same tariff and payment methods as Bury Road Car Park.

High Beach (our destination and where we will stop for lunch. If anyone wants to meet us there or only walk some of the way they could can park here):

Pillow Mounds Car Park, Rushey Pln, Waltham Abbey, Loughton IG10 4AE (run by Horizon Parking Ltd for the City of London Corporation, Epping Forest) – opposite the pub. Pay by RingGo app or call 0207 7110 0000
Tariff:

Up to an hour £1.50

Up to 2 hours £2.50

Up to 4 hours £4

Up to 6 hours £6

High Beach Visitor Centre Carpark (only has 12 carparks), High Beech, Waltham Abbey, Loughton IG10 4AE (behind the pub next to the visitor’s centre), It has the same tariff and payment methods as Pillow Mounds Car Park.

This is one of our trustees, Andy having a great time on a Super Rare walk.
RSVP
Please RSVP to let us know you are joining the walk using this short form so we know who is coming and whether we should a book to eat at the pub.
Everyone is welcome to come, whether you are friends, family, locals, or people who have experience of a super rare condition like PNH.

East Anglia Patient and Family Meeting - 15 March 2025
2025-03-15 10:30 - 12:00
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 full address of the venue is Bury Lane Farm Shop café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF
Time: 10.30am to 12pm

How do I keep emotionally healthy?
2025-04-28 12:00 - 13:00
Themes in this webinar will include how to keep yourself emotionally healthy so that you can be there for your child and the rest of your family.
Sign up here.

Mindfulness for Stress Taster Session
2025-05-07 10:00 - 12:00
Not sure if a mindfulness-based approach is for you? 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.
Click here for further details

COURSE Managing Stress and Living with Uncertainty with Catarina Baptista
2025-05-13 08:00 - 2025-06-17 17:00
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
