PNH Support
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Patient Stories

PNH Support/Resources/Patient Stories

Pam’s story

Tom’s story

Jane’s story

Kirsten’s story

Eric’s story

Resources
  • Patient Stories
  • Pam's story
  • Tom's story
  • Jane's story
  • Kirsten's story
  • Eric's story
  • Patient safety card
  • Living with PNH
  • Travelling with PNH
  • Pregnancy And Fertility
  • Glossary
  • Videos and Webinars
  • PNH National Service
  • EuroBloodNet
  • Covid-19

Upcoming Events

Mar 22
4:30 pm - 6:00 pm

“Connection between Aplastic Anaemia and PNH” Webinar – 22nd March 2023  – 4.30 pm to 6 pm (GMT)

Apr 19
4:30 pm - 6:30 pm

“What effect does Aplastic Anaemia and PNH have on my life?” Webinar – 19th April 2023 – 4.30 pm to 6 pm (GMT)

Apr 22
10:30 am - 12:00 pm

East Anglia PNH Patient and Family meeting – Saturday 22 April 2023

May 3
4:30 pm - 6:00 pm

“Pregnancy for Aplastic Anaemia and PNH” Webinar – 3rd May 2023 – 4.30 pm to 6 pm (GMT)

May 31
4:30 pm - 6:00 pm

“Life after BMT for Aplastic Anaemia and PNH” Webinar – 31 May 2023 – 4.30 pm to 6 pm (GMT)

View Calendar
Recent Posts
  • PNH features in Lancet Haematology
  • Launch of Super Rare Campaign – February and March 2023
  • National Community Survey of people living in the UK with bone marrow conditions
  • Introducing: The Better Together For Healthy Bone Marrow Project
  • “Risk and Course of COVID-19 in AA and PNH Patients, including Vaccination Strategies” Webinar Recording
Archives
  • March 2023
  • January 2023
  • November 2022
  • September 2022
  • August 2022
  • April 2022
  • March 2022
  • February 2022
  • July 2021
  • April 2021
  • July 2020
  • June 2019
  • April 2019
  • February 2019
  • January 2019
  • December 2018
  • October 2018
  • August 2018
  • July 2018
  • May 2018
  • February 2018
  • November 2017
  • May 2017
  • March 2017
  • November 2016
  • April 2016
  • September 2015

Latest Tweets

  • Ways you've got involved in SUPER RARE so far. Thank you to everyone who has joined in and supported people affected by #PNH so far. There is still time left! https://t.co/puE0mLPIAG #bettertogether #strongertogether #superrare #superrare2023 #charity #fundraising https://t.co/KYlLLB1LsM, 3 hours ago
  • Join this webinar for #patients on Wed 22 March 4.30pm to 6pm CET on #PNH and #AA and their connection @lichterzellen https://t.co/ACfNolO4Sm, March 19, 2023

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