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Archives By Month: November 2022

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National Community Survey of people living in the UK with bone marrow conditions

Posted on November 20, 2022

We are currently running the first ever National Community Survey of people living in the UK with bone marrow conditions, or caring for those with rare bone marrow conditions including […]

Read more About National Community Survey of people living in the UK with bone marrow conditions

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
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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, 4 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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