PNH Support
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Examples from PNH Registry

PNH Support/Examples from PNH Registry
  • Long-term Survival Benefit of Eculizumab Treatment in Patients With Paroxysmal Nocturnal Haemoglobinuria: Data From the International PNH Registry (2022)
  • Different clinical characteristics of paroxysmal nocturnal hemoglobinuria in pediatric and adult patients (2016)
  • Baseline characteristics and disease burden in patients in the International Paroxysmal Nocturnal Hemoglobinuria Registry (2014)
  • Use of Blood Transfusions In Paroxysmal Nocturnal Hemoglobinuria Patients with and without Aplastic Anemia Enrolled In the Global PNH Registry (2010)
  • Use of Blood Transfusions In Paroxysmal Nocturnal Hemoglobinuria Patients with and without Aplastic Anemia Enrolled In the Global PNH Registry (2010)

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
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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, 5 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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