lichterzellen
@lichterzellen
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helping those affected by the diseases PNH and aplastic anemia patient advocacy funding research member of PNHGA Impressum: https://t.co/q02iOEBQ0h
Köln, Deutschland
Joined February 2017
RT @roethal: Important informations on how to manage BTH in #pnh from the anual IPIG meeting! #ASH24 @AustinKulasekar @scheinbp @lichterzel…
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Progress in #treatingPNH ? You would think so, but only in a few privileged countries. Lets change that!
#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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If you are a patient please take this survey to support the research on AA/PNH.
🧬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] 🔗 [DE] #PNHAwareness2024
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Stay informed if you are #treatingPNH
If you are #TreatingPNH, please make sure your patients are informed of the potential complications (VTEs are 62 times more likely to occur in PNH patients compared to the general population!) #PNHAwareness2024
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Are you #treatingPNH ?
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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Education is key! If you are #TreatingPNH, make sure treatment aligns with the type of PNH! #PNHAwareness2024
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Wenn Sie Patient:innen mit PNH behandeln, seien Sie sich bewusst, dass Patient:innen das Ausmaß, an dem sie unter Symptomen leiden, anders bewerten, als Sie es möglicherweise einschätzen…
If you are #TreatingPNH, be aware that patients and physicians don't always agree on how burdensome symptoms are. For example, 46% of patients report fatigue as their most burdensome symptom, compared to only 30% of physicians #PNH #PatientCare #PNHAwareness2024
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If you're treating PNH please share!
#DidYouKnow We’ll be sharing crucial PNH facts over the next week? Here’s a preview video with important info! If you’re #TreatingPNH, feel free to share this informative video with your patients. Stay tuned for more updates #PNHAwareness2024 💪✨
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RT @GlobalPnh: If you are #TreatingPNH, consider testing patients with symptoms, such as unexplained thrombosis, bone marrow failure, hemol…
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Your role as a treating physician is crucial for patients to cope and live with the disease. Thank you!
If you are #TreatingPNH, please explain that PNH it is not an inherited disorder and it cannot be passed down to children from their parents #PNHAwareness2024
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Patients cooperate better if they understand everything the doctor wants to convey. You as a doctor can help by using lay language with patients. Your role is also crucial in early detection and #TreatingPNH by informing yourself or referring to a colleague who specialises.
As we reflect on Take a Loved One to the Doctor Day, let's remember the critical role you play in early detection and #TreatingPNH. Your dedication makes a difference in improving patient lives. Stay tuned for our map of PNH specialists, launching October 12th! #PNHAwareness2024
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Please support the PNH Global Alliance campaign to support PNH patients worldwide!
If you are #TreatingPNH, you will know it is an ultra rare disease. Raising awareness can help identify and support more patients, make sure you are up to date with the latest information! #PNHAwareness2024
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RT @marrow: Happy to share a link to my latest @BloodJournal commentary on an excellent paper by Gurnari addressing thrombosis in #PNH. Yo…
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A great project we are proud to be part of!
🌟 Exciting news! ADP participants and the PNH GA board and secretariat attended the @EHA Congress in Madrid. It was a fantastic experience filled with learning and networking. Thank you to everyone who made it impactful! #EHA2024 #PNHSupport #ADP #Hematology #Madrid
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RT @GlobalPnh: Our secretary Pascale Burmester presenting important results about the disparity in #access in #Europe to effective #PNH tre…
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Wir sind natürlich dabei!
🎉 We are excited to attend the @EHA_Hematology Congress in Madrid from June 13-16 with ADP participants. The event will enhance awareness of hematological disorders, including #PNH. ADP members will also receive training on patient advocacy. More info:
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You are attending the #EHA2024 then don't miss the @ERNEuroBloodNet Meeting on Thursday!
🎯Are you an @ERNEuroBloodNet Member, Affiliated partner or ePAG? Are you willing to know more about key actions on Registries & re-use of data and Best Practices? #Save the date for the @ERNEuroBloodNet Meeting at EHA Congress in Madrid! 📍13 June
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