PNH Support

Mindfulness Taster Session - 23 July 2024
2024-07-23 10:00 - 11:30 (Europe/London)
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
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
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
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
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
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
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
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
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.

Webinar on Wellbeing for Carers - 11 April - 5pm to 6pm
2024-04-11 17:00 - 18:00
A challenge faced by many who care for someone living with PNH, is taking time to care for themselves. This webinar offers parents and carers, (who often do not take the time to care for themselves) tools to support themselves while caring for the people they love.

Register here

Super Rare Campaign 2024 -1 February to 31 March 2024
2024-03-31 08:00 - 17:00
Welcome to Super Rare! Super Rare is all about being rare, but not alone. Our charities designed this campaign together to help people affected by Super Rare conditions to come together as a community. So sign up for an event, organise one, or order your pack now to start planning how you can get involved during February and March and earn your t-shirt!
Find out more here

East Anglia Face-to- Face Patient and Family Meeting - 9 March 2024
2024-03-09 10:30 - 12:00
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. Email contact@pnhuk.org.
Please note that you will need to pay for your own refreshments.
Location: Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF ​
(https://burylanefarmshop.co.uk/contact )

Update on PNH - Rare Disease Day - Thursday 29 February 2024 -1pm to 1.45pm
2024-02-29 13:00 - 13:45
Join PNH Support and the PNH National Service for an update on PNH from the PNH National Service to celebrate Rare Disease Day 2024 from 1pm to 1.45pm via Zoom. There will also be a chance to ask your questions.
Register to attend using this online form and you will be sent the Zoom details. Please watch out for the email which may go to your Junk email folder.
Please email contact@pnhuk.org with any questions.

Mindfulness Online Course starting 27 Feb - 7pm to 8.30pm
2024-02-27 19:00 - 20:30
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.
Even when we feel overwhelmed, Mindfulness can helps us create clarifying and compassionate pauses for our minds to settle.
Join this eight week mindfulness course.
Session dates:
27th February 2024 – 7pm-8.30pm
5th March 2024 – 7pm-8.30pm
12th March 2024 – 7pm-8.30pm
19th March 2024 – 7pm-8.30pm
26th March 2024 – 7pm-8.30pm
2nd April 2024 – 7pm-8.30pm
9th April 2024 – 7pm-8.30pm
16th April 2024 – 7pm-8.30pm
Register here

Free Online Managing Stress and Uncertainty Course from 25 Jan to 29 Feb 2024
2024-01-25 18:30 - 20:00
Managing Stress and Uncertainty Course with Catarina Baptista

The dates of this previously advertised course have now shifted by one day each. It now starts on Thursday 25 January and finishes on Thursday 29 February. Apologies for any inconvenience caused. Those who have already registered have been notified directly.
This 6 week online course will help you learn techniques to help you face the challenges of living with PNH. There are six weekly sessions each with 60 minutes of psycho-educational content and 30 minutes of meditation/reflective practice. 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 and times below:

Thursday 25th January, 18.30 – 20.00
Thursday 1st February, 18.30 – 20.00
Thursday 8th February, 18.30 – 20.00
Thursday 15th February, 18.30 – 20.00
Thursday 22nd February, 18.30 – 20.00
Thursday 29th February, 18.30 – 20.00

Register here

Everyday Mindfulness Webinar - 25 January 2024
2024-01-25 17:00 - 18:00
Join this webinar with clinical psychologist, Lesley Howells, to learn everyday mindfulness strategies to quieten the busyness of our minds and help us live a more meaningful life despite the challenges we face. This webinar is also a taster for the eight week Mindfulness Courses that the Better Together project run for the communities of 6 small charities including PNH Support (through funding received from the National Lottery Community Fund).

Register here to attend. :

Benefits Webinar - 18 January 2024
2024-01-18 18:30 - 19:30
Benefit Advisor, Robert Mandlestam is delivering this webinar to bring you information about the benefits you may be entitled to if you or someone you support has PNH, and advise about how to apply for them.
This webinar will include the following:
-Universal Credit
-Personal Independence Payment
-Carers Allowance
-Employment and Support Allowance
-Local support (council tax help and local hardship schemes)

Register here to attend.

Rare Voices Report Findings & Discussion Session - 9 December 2023 - 10am to 11am
2023-12-09 10:00 - 11:00
The Rare Voices report (launched on 14 November 2023) sets out the findings from the first ever national community survey into rare bone marrow conditions. This survey was a collaborative effort between the following charities:

PNH Support
The Aplastic Anaemia Trust
Fanconi Hope (Fanconi Anaemia)
DC Action (Dyskeratosis Congenita and Telomere Biology Disorders)
SDS UK (Schwachman Diamond Syndrome)
DBA UK (Diamond Blackfan Anaemia)
CAN – Congenital Anaemia Network (Red cell enzyme disorders (eg. pyruvate kinase deficiency, G6PD deficiency), Red cell membrane disorders (eg. Hereditary spherocytosis, hereditary elliptocytosis, pyropoikilocytosis), Sideroblastic anaemia (CSA),Congenital Dyserythropoietic Anaemia

On Saturday 9 December (10am to 11am) we welcome patients and families from all the charities/conditions listed above to an online Zoom session from 10am to 11am to hear the main findings, our commitments to addressing the survey findings and our recommendations to our stakeholders to address them too. Attendees will have the opportunity to ask questions and make comments should they wish. We also hope to be able to split patient/carers/family members into Zoom break out rooms with others living with the same condition where they can ask questions relevant to their condition.
To register for the Zoom session please complete this short online form after which you will be emailed the Zoom details.
For any questions please email contact@pnhuk.org.

London Face-to-face Patient & Family Meeting - Saturday 2 December 2023
2023-12-02 11:00 - 13:00
One of our members (Victoria) has offered to host a London face-to-face patient and family meeting on Saturday 2 December 2023 from 11am at the Hayward Gallery cafe located on the first floor of the Hayward Gallery building in central London. It is a few minutes walk from Waterloo station and is well connected by buses.

The cafe serves a light lunch salad bar, a variety of pastries, teams and coffee. It has a large seating area with tables of various sizes which can be joined together.

Email us on contact@pnhuk.org with any questions.

East Anglia Patient and Family Meeting/Christmas Meal - 2 December 2023
2023-12-02 10:30 - 12:00
The East Anglia PNH support group are having a Christmas lunch at 12.30pm on Saturday 2nd December 2023.

It will be at The Tickell Arms, North Road, Whittlesford, Cambridge, CB22 4NZ. Please see their website for information about Christmas meals.

All Patients & their family are more than welcome to join us If you would like to come please email contact@pnhuk.org for more information.

We look forward to kicking off the festivities with PNH Support friends old and new.

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Webinar on Everyday Mindfulness
2023-11-16 17:30 - 18:30
Register for a webinar on”Everyday Mindfulness” on Thursday 16th November, 17.30 – 18.30 delivered by Lesley Howells, Clinical Psychologist.

Every day mindfulness strategies to quieten the busyness of our minds and help us live a more meaningful life despite the challenges we face. This webinar is also a taster for the eight week Mindfulness Courses that the Better Together project run for our communities.

Register here

Mindfulness Course (8 weeks online) - from 28 September, 7pm to 9pm
2023-09-28 19:00 - 21:00
If you’re living with a condition and being supported by any of the charities listed below, whether you have it yourself or you’re supporting a close family member, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project, this course is designed to help you to deal with the emotional burden of living with these conditions.

Mindfulness helps us find calm, even when we feel overwhelmed, it helps us create clarifying and compassionate pauses for our minds.
This course is designed to help you to deal with the emotional burden of living with this condition.
Join our eight-week course taught online from 28th September, 7-9pm.
Session dates
Please add these dates to your diary! You will receive an email the day before each session as a reminder, with the Zoom link.

28th September 2023 – 7pm-9pm
5th October 2023 – 7pm-9pm
12th October 2020 – NO SESSION
19th October 2023 – 7pm-9pm
26th October 2023 – 7pm-9pm
2nd November 2023 – 7pm-9pm
9th November 2023 – NO SESSION
16th November 2023 – 7pm-9pm
23rd November 2023 – 7pm-9pm
30th November 2023 – 7pm-9pm

With thanks to…
Our Better Together Alliance charities are able to work together and offer you this course because of support from The National Lottery Community Fund. Thanks to players of The National Lottery.

For more information and to register, click here

Cheshire PNH Patient and Family Meeting - Saturday 23 September 2023
2023-09-23 11:00 - 13:00
Join patients and family members for a face-to-face get together at Bents Garden Centre Warrington Road, Glazebury, Warrington, Cheshire, WA3 5NT on Saturday 23 September 2023 at 11am.
Sue and Colin Coles will be at the entrance to direct you to the right coffee place if needed. Partners, carers or family welcome too.

Managing Stress and Uncertainty 12 week online course - starts 12 September, 7pm to 8pm
2023-09-12 07:00 - 20:00
This 12 week course will help you learn techniques to help you face the challenges of living with PNH. There are six weeks of learning sessions, interspersed with six weeks of supported sessions where you are encouraged to try out the techniques you have learned in your day-to-day life.

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. The strategies are straightforward and easy to build into your day.

Session dates

12th September 2023 – 7-8pm
19th September 2023 – 7-8pm
26th September 2023 – 7-8pm
3rd October 2023 – 7-8pm
10th October 2023 – 7-8pm
17th October 2023 – 7-8pm
24th October 2023 – 7-8pm
31st October 2023 – 7-8pm
7th November 2023 – 7-8pm
14th November 2023 – 7-8pm
21st November 2023 – 7-8pm
28th November 2023 – 7-8pm

With thanks to…
Our Better Together Alliance charities are able to work together and offer you this course because of support from The National Lottery Community Fund. Thanks to players of The National Lottery

For more information and to register click here.

Face-to-face London Patient Meeting - Saturday 2 September 2023
2023-09-02 11:00 - 13:00
One of our members (Victoria) has offered to host a London face-to-face patient meeting on Saturday 2 September 2023 from 11am at the Hayward Gallery cafe located on the first floor of the Hayward Gallery building in central London. It is a few minutes walk from Waterloo station and is well connected by buses.

The cafe serves a light lunch salad bar, a variety of pastries, teams and coffee. It has a large seating area with tables of various sizes which can be joined together.

Suggested discussion topic: personal experience of fatigue, perception, feeling and understanding of it and ways of dealing with it – plus anything else anyone is willing to share.

Email us on contact@pnhuk.org with any questions.

"Managing your Sleep Webinar" on Thursday 27 July
2023-07-27 18:30 - 19:30
Managing your Sleep Webinar
We all experience difficulties with sleep from time to time, but when you are living with aplastic anaemia and other rare bone marrow failures (including PNH), sleep issues can become even more challenging.

Join the webinar hosted by the Aplastic Anaemia Trust and delivered by Psychologist Catarina Baptista, to offer you guidance, tips and useful tools to help you implement and maintain a positive sleep routine.

About Catarina Baptista
Catarina has worked with the Aplastic Anaemia Trust since January 2023 and has delivered the Managing Stress and Living with Uncertainty Course which some of you may have attended. Catarina has worked in health settings for the last 18 years and has vast experience in cancer care, fatigue and pain.
Catarina works with people who have been psychologically and emotionally impacted by challenging conditions in group and individual settings. She helps them to find meaning and purpose and live a life that serves them despite their diagnosis. Managing stress, anxiety, dealing with humour fluctuations, adapting to body and emotional changes are some of the areas of biggest investment.
The work she does is tailored and she gives a lot of value to the therapeutic dynamic and relation in the process of development and change.
If you have any questions for Catarina in advance of the webinar, please do submit your question when you sign up for the event.
Please sign up to join the webinar here

Save the date - PNH Support Annual General Meeting - 1 July 2023
2023-07-01 10:00 - 12:00
The Annual General Meeting for PNH Support which is eligible to be attended by members of PNH Support will be held via Zoom on Saturday 1 July 2023 at 10am to 12pm.
If you are a member of PNH Support you will sent the papers for the meeting by email or post (if you don’t have an email address).
If you are not a member, and would like to attend, please complete a membership form here

Mindfulness Course - 8 weeks from Wednesday 28 June - 7pm to 9pm
2023-06-28 19:00 - 21:00
As part of the Better Together project (in which PNH Support is a partner), patients and family members are invited to take part in a free 8 week mindfulness course delivered by Lesley Howells, Maggie’s Lead Consultant Clinical Psychologist for Scotland. Mindfulness can help us even when we feel overwhelmed, it helps us create clarifying and compassionate pauses for our minds.
Join the eight-week course taught online.
Two hours each Wednesday evening from 28th June, 7-9pm.
Register for the course here.

Webinar on Benefits - Thursday 22 June 2023 - 5.30pm to 6.30pm
2023-06-22 17:30 - 18:30
If you’re living with aplastic anaemia or another related condition (including PNH) and being supported by either of the charities listed below, whether you have it yourself or you’re supporting a close family member, you may have experienced difficulty in navigating the complex benefits system. This webinar is designed to help you understand the benefits which may be available to you.

The webinar will be delivered by Atif Kaudri, who is a Benefits Expert and Lawyer.
Atif will offer a brief overview of the benefits system and then will be available to answer your questions. Please feel free to submit your questions when you sign up to the event, or bring them with you when you attend.
Atif currently works for Mind as a Lawyer. He is involved in strategic litigation to bring about changes in the substantive law and legal procedures for Mind’s beneficiaries i.e., people with mental health problems.

Atif has worked in the welfare rights field since 2005. Initially he volunteered at his local Citizens Advice Bureau (CAB) while completing his Postgraduate Diploma in Professional Legal Skills from City University, London. From 2008 to 2014 he worked for various Macmillan CAB Welfare Benefits services while managing and providing casework services including tribunal representation. He was in a similar role since 2014 for 7 years for Maggie’s Oxford. He was also seconded to the Aplastic Anaemia Trust during his time at Maggie’s.
To register for this webinar click here.

"Life after BMT for Aplastic Anaemia and PNH" Webinar - 31 May 2023 - 4.30 pm to 6 pm (GMT)
2023-05-31 16:30 - 18:00
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 disseminate very topical areas related to AA and PNH among the patient community in order to give visibility to the medical services available in Europe, recent quality of life cutting-edge advances in the field of this rare condition (or even very rare, as for PNH) and their treatment options.
Programme

Six sessions, once per month on a Wednesday, from 4.30 pm to 6 pm (GMT), starting from November 2022.
25 min of presentation + 35 min for questions (written in the chat)
On Zoom
Program will be recorded and part of theERN-EuroBloodNet’s EDU YouTube channel

Each session is moderated by a duo of an expert physician and a patient representative, who host the session together. First, the physician introduces the topic and shares clinical knowledge. The patient representative ensures that the information provided are accessible to patients and their families and also highlights which are the key crucial concepts for patients to the expert and asks for clarification of these for the webinar audience.
Question & Answer sessions will be moderated by Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance)

Life after BMT for Aplastic Anaemia and PNH – 31 May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Edgar Jost (University Hospital RWTH Aachen) and Pascale Burmester (Lichterzellen)
Psychological impact and well-being in Aplastic Anaemia and PNH – 28 June 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Catarina Baptista and patient to be confirmed
REGISTER HERE!
