@PNHSupport profile picture
PNH Support @PNHSupport
Joined June 2015
  • Tweets 1,650
  • Following 528
  • Followers 469
195 Photos and videos
Hearing about the importance of thinking about #telomeres to improve diagnosis of #dyskeratosiscongenita, the need for #multidisciplinary care and #education of #healthcareprofessionals @DC_Action @_hilarylonghurs @JanePaxton6
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It is important for patients to be aware that they can and should report any possible side effect from a medication to the regulator the MHRA - its called the "Yellow Card Scheme" #PNH #patientsafety #YellowCard
MHRAgovuk
@MHRAgovuk
8 Nov 2024
📢 Report any adverse effects to our Yellow Card scheme. #MedSafetyWeek Visit bit.ly/3BzZKn3 to read guidance for individuals living with diabetes, of detailed information on how to report any safety concerns with your device and what information needs to be included.
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PNH Support retweeted
ERN EuroBloodNet@ERNEuroBloodNet
31 Oct 2024
📢And also next week don't miss the #ThursdayWebinar on "Clinical usefulness of next-generation sequencing” 👩‍🏫Provided by Noemi Roy 👉Register now! eurobloodnet.eu/education/th…… … #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology
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PNH Support retweeted
PNH Global Alliance@GlobalPnh
1 Nov 2024
🧡 On October 10th, we celebrated World Mental Health Day! 🧡 Living with PNH is challenging, but you are not alone. Together, we create a supportive community where every patient is heard and valued. Let's keep raising awareness and breaking the stigma. 🌟 #MentalHealth
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Check out all the #PNHAwareness2024 materials and resources on @GlobalPnh's website: pnhglobalalliance.org #TreatingPNH

PNH Global Alliance@GlobalPnh
12 Oct 2024
#DidYouKnow we have a new resource page on our website? 📚✨ It consolidates all recent updates, making it easy to stay informed and keep updated. #PNHAwareness2024
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It's so important for healthcare professionals to consult those who are specialists in #PNH so patients get the most up-to-date advice, care and expertise. In the UK this is the PNH National Service: pnhserviceuk.co.uk @myeloidkings @leedshaem #TreatingPNH

PNH Global Alliance@GlobalPnh
12 Oct 2024
If you are #TreatingpPNH, please consider consulting a PNH specialist in your country! 👩‍⚕️ #PNHAwareness2024 Check the map on our website!
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This tool will help #PNH patients all over the world find their nearest patient organisation which is vital for peer support. pnhglobalalliance.org/resour…

PNH Global Alliance@GlobalPnh
12 Oct 2024
#DidYouKnow We’ve created an interactive map to help you easily find and contact PNH specialists? This tool makes it easier to find the right support. 🗺️ #PNHAwareness2024
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Today is Global PNH Awareness Day!🎉🌍Thank you for your support during our campaign. We've raised awareness and supported those affected by #PNH. Stay tuned for more info we'll be posting today. Let’s make every day a step closer to equal care and treatment. #PNHAwareness2024
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If you are a #PNH and/or #AplasticAnaemia patient please take this short survey to help us develop a specific #QOL questionnaire for PNH and AA @AplasticAnaemia
PNH Global Alliance@GlobalPnh
11 Oct 2024
🧬Quality of life is key for PNH & AA, but there’s no disease-specific questionnaire yet. A research team in Germany has developed one up to phase 3 🌍 Please take 2 mins to share your thoughts! 🔗 [EN] buff.ly/3Y6AjC9 🔗 [DE] buff.ly/3Y7CZj0 #PNHAwareness2024
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#TreatingPNH? Make sure you are up to date with the treatments! But, not all countries have #PNH-specific treatments. According to @EuroBloodNet, at least one EU country had no access to them, and approx. 80% of patients don't have them due to very high prices #PNHAwareness2024
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#DidYouKnow that red blood cell transfusions can help manage #PNH by increasing hemoglobin levels and alleviating anemia symptoms? While not a cure, this supportive treatment can provide relief and are given as required. 💉🩸#PNHAwareness2024
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#DidYouKnow that some countries in the EU don't have access to #PNH specific treatments? According to a 2023/2024 @ERNEuroBloodNet survey, at least one country in the EU had no access to #PNH specific treatment. #PNHAwareness2024
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#DidYouKnow that some #PNH patients treated with C5 inhibition still experience symptoms like anemia and fatigue and might need red cell transfusions? This can be caused by extravascular hemolysis 🌟💉 #PNHAwareness2024
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If you are #TreatingPNH, don't forget to check the D-Dimer! - every increase of the #PNH clone by 10% increases the risk of thrombosis by a factor of 4. #PNHAwareness2024
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