Now at BlueSky: @pnhsupport.bsky.social. Paroxysmal nocturnal haemoglobinuria (PNH) - PNH Support is a registered CIO (no. 1161518) supporting patients.
England and Wales
Joined June 2015
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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
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
📢 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.
PNH Support retweeted
📢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
PNH Support retweeted
🧡 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
Check out all the #PNHAwareness2024 materials and resources on @GlobalPnh's website: pnhglobalalliance.org #TreatingPNH
#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
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
If you are #TreatingpPNH, please consider consulting a PNH specialist in your country! 👩⚕️ #PNHAwareness2024 Check the map on our website!
This tool will help #PNH patients all over the world find their nearest patient organisation which is vital for peer support. pnhglobalalliance.org/resour…
#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
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
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
🧬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
#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
#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
#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
#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
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
