PNH Support

"Connection between Aplastic Anaemia and PNH" Webinar - 22nd March 2023 - 4.30 pm to 6 pm (GMT)
2023-03-22 16:30 - 18:00 (Europe/London)
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)

Connection between Aplastic Anaemia and PNH – 22nd March 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen)
What effect does Aplastic Anaemia and PNH have on my life? – 19th April 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support)
Pregnancy for Aplastic Anaemia and PNH – 3rd May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
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!

Online PNH Patient and Family Conference - Saturday 18 March 2023
2023-03-18 10:00 - 13:00 (Europe/London)
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.

The Together Walk - 25 February 2023
2023-02-25 09:00 - 17:00 (Europe/London)
On the 25th February people up and down the country will be walking to raise money for their chosen Super Rare charity.
You decide where the walk will be and the distance. It could be in your local park, your favourite walk or even laps of your garden! You can walk on your own or with friends and family.
If you’d like to connect with other Super Rare walkers, take a look at the events below to see if anyone in your local area has arranged a walk you can join on the day – or submit your own walk below to invite people to join you!
Wherever you decide to walk on the 25th February, you are showing people affected by super rare bone marrow conditions that we are stronger together.
On the day, share photos of your walk on social media, tag in your chosen charity and use the #togetherwalk2023 to see where others are walking.
Find out more or register your walk here!

"Treatment of PNH" Webinar - 8th February 2023 - 4.30 pm to 6 pm (GMT)
2023-02-08 16:30 - 18:00 (Europe/London)
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)

Treatment of PNH – 8th February 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Regis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Maria Piggin (PNH Support)
Connection between Aplastic Anaemia and PNH – 22nd March 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen)
What effect does Aplastic Anaemia and PNH have on my life? – 19th April 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support)
Pregnancy for Aplastic Anaemia and PNH – 3rd May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
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!

"Treatment of Aplastic Anaemia" Webinar - 11th January 2023 - 4.30 pm to 6 pm (GMT)
2023-01-11 16:30 - 18:00 (Europe/London)
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)
Understanding Aplastic Anaemia – 23rd November 2022 – 4.30 pm to 6 pm (GMT)
Speakers: Beatrice Drexler (University Hospital Basel) and Isabelle Flageul
Understanding PNH – 14th December 2022 – 4.30 pm to 6 pm (GMT)
Speakers: Flore Sicre de Fontbrune (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Ulrike Göbel
Treatment of Aplastic Anaemia – 11th January 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Antonio Risitano (AOU Federico II – Naples) and Jeanne Arenas
Treatment of PNH – 8th February 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Regis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and Maria Piggin (PNH Support)
Connection between Aplastic Anaemia and PNH – 22nd March 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Carlo Dufour ( IRCCS Istituto Giannina Gaslini, Genoa) and Pascale Burmester (Lichterzellen)
What effect does Aplastic Anaemia and PNH have on my life? – 19th April 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Jens Peter Panse (University Hospital RWTH Aachen) and Maria Piggin (PNH Support)
Pregnancy for Aplastic Anaemia and PNH – 3rd May 2023 – 4.30 pm to 6 pm (GMT)
Speakers: Britta Höchsmann (Ulm University Medical Center (UUMC)) and Alex Naylor (PNH Support)
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!

East Anglia PNH Patient and Family Zoom meeting - Saturday 17 December 2022
2022-12-17 10:30 - 12:00 UTC
Join PNH patients and family members online for an informal chat. All welcome! BYO refreshments.

Date and Time: 10.30am to 12.00pm on Saturday 17th December 2022
Location: Zoom. Please email contact@pnhuk.org for Zoom details.

"Understanding PNH" Webinar - 14th December 2022 - 4.30 pm to 6 pm (GMT)
2022-12-14 16:30 - 18:00 (Europe/London)

PNH Patient Virtual Meeting: Saturday 5 November 2022 - 10am to 11.30am
2022-11-05 10:00 - 11:30 (Europe/London)
PNH Support, PNH Scotland and the PNH National Service invite you to join us on Saturday 5 November 2022, 10am to 11.30am via Zoom
Agenda:

10am – PNH and meningitis – Louise Arnold, Advanced Nurse Practitioner – St James’s Hospital, Leeds
10.45am – Managing Fatigue – Claire Traub – Specialist Occupational Therapist, Addenbrooke’s Hospital, Cambridge

Register here: https://us06web.zoom.us/…/tZMtf-2uqjkuE9bmQKtWBHdEMDhE…

East Anglia Patient and Family Coffee and Cake Meeting - Saturday 17 September 2022
2022-09-17 10:30 - 12:00 UTC | Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF, SG8 6DF, United Kingdom
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 by emailing contact@pnhuk.org.
Note that you will need to pay for your own refreshments.
Date: Saturday 17 September 2022
Time: 10.30am
Location: Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF

Sepsis Awareness Webinar hosted by the Aplastic Anaemia Trust - 8 September - 6pm to 7pm
2022-09-08 18:00 - 19:00 (Europe/London)
Sepsis is a serious condition, and can be life-threatening if left untreated. For people with aplastic anaemia and other rare bone marrow failures, the disease itself, and the impact that the treatments have on the immune system mean that people with these conditions are at an increased risk of developing sepsis, and experiencing complications if it is left untreated.

Join the AAT for an informative webinar about Sepsis, and learn more about its signs, symptoms, and what to do if you feel concerned that something isn’t right. We know that is isn’t always easy to speak up when you feel concerned about your health, and that sometimes healthcare professionals don’t always fully understand the risk of sepsis in relation to aplastic anaemia and bone marrow failure conditions.
We will be joined by Bryony Forrest, a Haematology Clinical Nurse Specialist based in Leeds, who will be on hand to answer your questions.

Register to attend here

ERN-EuroBloodNet Webinars for Patients: Risk and Course of COVID-19 in AA/ PNH Patients, Including Vaccination Strategies
2022-07-05 16:00 - 17:00 UTC
The European Reference Network, EuroBloodNet has organised a patient webinar: Risk and Course of COVID-19 in AA and/or PNH Patients, including vaccination strategies. The webinar aims to provide highly specialised and cutting-edge knowledge for patients and their families. It is led by experts in the field of AA and PNH, health professionals and patients representatives. The program has been shaped with 2 patients associations: PNH Support (focused on PNH represented by Maria Piggin) and Lichterzellen (focused on AA and PNH and represented by Pascale Olivia Burmester).

The webinar will be held on Tuesday 5th of July from 4pm to 5pm (BST)
Webinar contents:

Presentations: Prof Corrado Girmenia (AOU Policlinico Umberto I – Rome) and Dr Austin Kulasekararaj (King’s College London).
Round Table: Prof Régis Peffault de la Tour (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis), Prof Antonio Risitano (AOU Federico II – Naples), Prof Carlo Dufour (IRCCS Institute Giannina Gaslini – Genoa).
Question&Answer: Maria Piggin (PNH Support and PNH Global Alliance) and Pascale Olivia Burmester (Lichterzellen and PNH Global Alliance) are moderating the session.

Submit your questions to be answered at the webinar and register to attend.
If you would like to ask any questions on the risks and course of COVID in AA and/or PNH patients, including vaccination strategies you can click on the link below and submit them here

Register here to attend the webinar
Click here to register for the webinar.

East Anglia PNH Support Group Summer Meal - Saturday 2 July 2022 at 12pm
2022-07-02 12:00 - 14:30 UTC
The East Anglia PNH Support patient group is having an informal pub garden lunch on Saturday 2 July at 12pm. This is a chance for patients and their families to get together. Everyone welcome!
For more details and to RSVP (by June 27th 2022) please email contact@pnhuk.org.

PNH Support Members' Annual General Meeting - 18 June 2022 - 10am to 12.30pm
2022-06-18 10:00 - 12:30 UTC
Members of PNH Support are welcome to join our AGM to be held virtually on Zoom on 18 June 2022 and vote on the annual report and accounts and any other proposed resolutions. Members will also hear about what activities we have undertaken in the past year ending 31 March 2022 and contribute their thoughts on our plans for the coming year.
If you are a PNH patient or family member living in England, Wales or Northern Ireland and would like to become a member of PNH Support (membership is free) please complete this form.
Please contact us on contact@pnhuk.org with questions or for the Zoom details (if you are already a member).

East Anglia Patient and Family Coffee and Cake meeting
2022-05-21 10:30 - 12:30 UTC | Bury Lane Farm Shop Café, A10 By Pass, Melbourn, Royston, Herts, SG8 6DF, SG8 6DF, United Kingdom
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.
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

For confirmation of attendance or any questions please email: contact@pnhuk.org

Navigating the new 'normal' with no COVID restrictions - 20 April 2022
2022-04-20 17:30 - 18:30 UTC
How do you feel about returning to ‘normal’ without COVID restrictions?

We are aware that this is a daunting prospect for many of us who have spent many months shielding and who may still be.
Join us on Wednesday 20 April 2022, 5.30pm to 6.30pm via Zoom when Philip Alexander, the Lead Psychotherapist from Haemato-oncology at Kings College Hospital, London will lead a discussion on this topic.

Please register to attend by emailing contact@pnhuk.org.

Please also send any questions you would like answered ahead of the session to the same email address.

East Anglia PNH Patient and Family Zoom meeting - 12 March 2022
2022-03-12 10:30 - 12:00 UTC
PNH patients and family members are welcome to join the East Anglia Patient and Family Zoom meeting.
Date and Time: 10.30am to 12.00pm on Saturday 12th March 2022
Location: Zoom
Details: Join PNH patients and family members online for an informal chat. BYO refreshments.
All welcome!
BYO refreshments.

Please email contact@pnhuk.org for Zoom details.

Looking after your mental wellbeing - join the AAT's Wellbeing Wednesdays!
2022-02-23 05:00 - 18:00 UTC
Maggie’s lead psychologist Lesley Howells joins the Aplastic Anaemia Trust (AAT) and their patient community members (including those with PNH) every week, for an interactive and friendly session via Zoom with the focus on mental wellbeing at this very challenging time.
Wednesdays from 5pm to 6pm
Struggling to cope with the uncertainty? It’s all over-whelming? Self-isolation is bringing back memories of gruelling treatment? You’d like to learn about simple ways to stay mentally and emotionally well or just want to chat with a specialist about your situation? Then this friendly weeky chat is for you.
There’s no commitment to join every week, and if you’ve never joined us before do come to whatever session works for you – we would love to meet you.
Please register here
Please feel free to drop the AAT a line in advance if you have a specific question for Lesley or a concern that’s been playing on your mind – support@theaat.org.uk
The AAT is hugely grateful to Lesley and the wonderful Maggie’s Centres for their help at this tough time.

Webinar on Living with aplastic anaemia or PNH - with CNS, Louise Arnold - 16 February 2022- 5.30pm
2022-02-16 17:30 - 18:30 UTC
This webinar hosted by the Aplastic Anaemia Trust (AAT) is all about dealing with any day to day difficulties people with aplastic anaemia might be struggling with. Whether you’re dealing with a sore mouth, managing medication side effects or dealing with infections, or something else entirely – bring your gripes and concerns to get tips on how to feel better.
This is your chance to raise your bugbears with a clinical nurse specialist, and connect with a friendly online room full of people who understand what you’re going through.
This session will be led by Louise Arnold, a Trainee Advanced Clinical Practitioner (Nurse) from the Department of Haematology at St James’ Institute of Oncology.
To register click here.
If you have a question for Louise, or a specific topic you’d like us to talk about, we would appreciate it if you could send it to the AAT in advance, either at the time of booking or by emailing us at support@theaat.org.uk.

PNH Support and Connect December Meeting via Zoom - Saturday 11 December
2021-12-11 10:30 - 12:00 UTC
Join us for a pre- holiday season patient and family Zoom meeting from 10.30am to 12pm. We will have guest speakers including PNH consultants to speak about latest updates and research on PNH. BYO refreshments!

Instructions on using Zoom: https://www.ageuk.org.uk/…/how-to-use-zoom-for-the…

PNH Support East Anglia Patient and Family Online meeting - Saturday 4 December 2021 - 10.30am to 12pm
2021-12-04 10:30 - 12:00 UTC
East Anglia Patient and Family Zoom meeting
Date and Time: 10.30 – 12.00 Saturday 4th December 2021
Location: Zoom
Meeting Details: Join PNH patients and family members online for an informal chat. BYO refreshments.
All welcome!

Instructions on using Zoom: https://www.ageuk.org.uk/…/how-to-use-zoom-for-the…

Email contact@pnhuk.org for the Zoom details.

PNH Support and Connect October Meeting via Zoom - Saturday 30 October 2021
2021-10-30 10:30 - 12:00 UTC
Join us for an informal chat with patients and family members from 10.30 to 12pm on Zoom. Please email contact@pnhuk.org for Zoom details.

2021 Aplastic Anemia and PNH Research Update from European Haematology Association Congress 2021 (EHA) and American Society of Clinical Oncology (ASCO)
2021-10-11 18:00 - 19:00 UTC
2021 Aplastic Anemia and PNH Research Update from European Haematology Association Congress 2021 (EHA) and American Society of Clinical Oncology (ASCO) by Dr Austin Kulasekararaj on Monday 11 October 2021 from 6pm to 7pm (GMT or 1pm to 2pm EDT). Please resgister here to attend.

This webinar focuses on the latest in research presented at the 2021 European Hematology Association(EHA) and American Society of Clinical Oncology (ASCO) annual meetings. Dr. Austin Kulasekararaj has selected a number of abstracts (research summaries) and provides a high-level assessment of new and ongoing research into treating aplastic anemia and/or PNH. There will be a Q & A session at the end of the presentation
https://www.aamds.org/…/2021-aplastic-anemia-and-pnh…

PNH Support East Anglia Patient and Family Face-to- face Meeting - 4 September 2021 - 10.30am to 12pm
2021-09-04 10:30 - 12:00 UTC
East Anglia Patient and Family Coffee and Cake meeting
Date and Time: 10.30 – 12.00 Saturday 4th September 2021
Location: Bury Lane Farm Shop (outside seating)
Details: Join PNH patients and family members for an informal chat over coffee and cake. We will be sitting in socially distanced outdoor seating that is not under cover so please bring your own umbrellas, blankets, sun cream as appropriate!

Any questions please email contact@pnhuk.org.

PNH Support and Connect Meeting - Saturday 21 August 2021 - 10.30pm to 12pm
2021-08-21 10:30 - 12:00 UTC
Join us for an online (via Zoom) catch up with other PNH patients and family members. We will also present the findings from the latest patient and carer survey.

Email us on contact@pnhuk.org for the Zoom details.

Test Event
2021-04-12 08:00 - 17:00 UTC
loerem
