PNH Support

Now at BlueSky:
@pnhsupport.bsky.social. Paroxysmal nocturnal haemoglobinuria (PNH) - PNH Support is a registered CIO (no. 1161518) supporting patients.

[PNH Support @PNHSupport]

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

[PNH Support @PNHSupport]

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]

📢 Report any adverse effects to our Yellow Card scheme. #MedSafetyWeek

Visit https://t.co/VU356yslED 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.

[ERN EuroBloodNet @ERNEuroBloodNet]

📢And also next week don't miss the #ThursdayWebinar on "Clinical usefulness of next-generation sequencing”

👩‍🏫Provided by Noemi Roy
👉Register now! https://t.co/PpbnqBON4d…

… #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology

[PNH Global Alliance @GlobalPnh]

🧡 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

[PNH Support @PNHSupport]

Check out all the #PNHAwareness2024 materials and resources on @GlobalPnh's website: https://t.co/snd3ynEcJC #TreatingPNH

[PNH Global Alliance @GlobalPnh]

#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

[PNH Support @PNHSupport]

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: https://t.co/OJlg47SFPu @myeloidkings @leedshaem #TreatingPNH

[PNH Global Alliance @GlobalPnh]

If you are #TreatingpPNH, please consider consulting a PNH specialist in your country! 👩‍⚕️ #PNHAwareness2024 Check the map on our website!

[PNH Support @PNHSupport]

This tool will help #PNH patients all over the world find their nearest patient organisation which is vital for peer support. https://t.co/F3aCMiC2vU

[PNH Global Alliance @GlobalPnh]

#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

[PNH Support @PNHSupport]

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

[PNH Support @PNHSupport]

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]

🧬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] https://t.co/cxjEqF0VQ2
🔗 [DE] https://t.co/CEtqL4UfLf

#PNHAwareness2024

[PNH Support @PNHSupport]

#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

[PNH Support @PNHSupport]

@leedshaem @myeloidkings @ERNEuroBloodNet @EHA_Hematology @ASH_hematology @BritSocHaem @eurordis #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

[PNH Support @PNHSupport]

#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

[PNH Support @PNHSupport]

@leedshaem @myeloidkings @ERNEuroBloodNet @EHA_Hematology @ASH_hematology @BritSocHaem @eurordis #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

[PNH Support @PNHSupport]

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