PNH Patient Virtual Meeting: Saturday 5 November 2022 – 10am to 11.30am
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 […]
“Understanding PNH” Webinar – 14th December 2022 – 4.30 pm to 6 pm (GMT)
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 […]
East Anglia PNH Patient and Family Zoom meeting – Saturday 17 December 2022
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.
“Treatment of Aplastic Anaemia” Webinar – 11th January 2023 – 4.30 pm to 6 pm (GMT)
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 […]
“Treatment of PNH” Webinar – 8th February 2023 – 4.30 pm to 6 pm (GMT)
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 […]
The Together Walk – 25 February 2023
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 […]
Online PNH Patient and Family Conference – Saturday 18 March 2023
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 […]
“Connection between Aplastic Anaemia and PNH” Webinar – 22nd March 2023 – 4.30 pm to 6 pm (GMT)
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 […]
“What effect does Aplastic Anaemia and PNH have on my life?” Webinar – 19th April 2023 – 4.30 pm to 6 pm (GMT)
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 […]
“Pregnancy for Aplastic Anaemia and PNH” Webinar – 3rd May 2023 – 4.30 pm to 6 pm (GMT)
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 […]
East Anglia PNH Patient and Family meeting – Saturday 13 May 2023
An informal get together for PNH patients and their families to share their experiences of living with PNH. New members are always welcome. 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. […]
Life, Health and Travel Insurance Webinar – 25 May 2023
This webinar is hosted by the Aplastic Anaemia Trust but open to the PNH Support community as well. A challenge faced by many living with aplastic anaemia and other rare bone marrow failures is understanding their rights around all types of insurance. Join this webinar on 11th May at 5.30pm where Insurance experts Dianne Wheeler […]