Latest posts tagged with #BleedingDisorders on Bluesky
💡Missed a HemeHub webinar?
All past sessions are available to watch anytime on YouTube!
Sessions organized by topic can also be viewed directly on our website.
🌐Explore more: hemehub.org
#HemeHub #Hematology #MedicalEducation #HemeOnc #BMF #Lymphoma #BleedingDisorders #ThromboticDisorders
📣 On #WorldHealthDay, the EHC calls on EU policymakers to get the #EUBiotechAct right — with #Patients with #BleedingDisorders at the centre, real-world evidence & cross-border #ClinicalTrials. #StandWithScience 👉 buff.ly/rQxzkpz
@who.int
🌐Enhance your hematology knowledge with HemeHub webinars, available anytime.
All past sessions are organized by topic directly on our website and are also available on YouTube.
🔗 Learn more at hemehub.org
#HemeHub #Hematology #HemeEd #HemeOnc #BMF #Lymphoma #BleedingDisorders #ThromboticDisorders
New episode of #Haemcast out now! Hannah, Mark and Jackie discuss how they talk to their children about their bleeding disorder. In collaboration with Local families with bleeding disorders.
🔗 https://loom.ly/_Pr-GBk
#LFWBD #bleedingdisorders #haemophilia #families #podcast
#HemeSky #MedSky
🎯 We'll address your questions on #Ageing with #BleedingDisorders throughout our 2025-2026 #LivingWellAgeingWell project, check its resources: buff.ly/mB2IPh0
❓#Ageing with #BleedingDisorders brings unique challenges. What worries you? Share your questions anonymously here 👉 buff.ly/15hLxQi
It is feasible to implement a public health policy that improves the management of #IBDs in less-resourced countries, as demonstrated by real-world success in Brazil. Published in @bloodjournals.hematology.org.
https://bit.ly/4uQ6moh
#BleedingDisorders
📣 Behind every policy ask is a lived experience. 🦷 On #WorlOralHealthDay, EHC shares stories from people with #BleedingDisorders on #OralHealth challenges & what needs to change. 🔗 Read their voices: buff.ly/cKBCP2c
#WOHD26 #WOHD2026
🦷On #WorldOralHealthDay, we call for better #OralHealth care for people with #BleedingDisorders, outlining priorities for accessible, coordinated dental care. 📣 Read more: buff.ly/3Ko3jxs
@stinebosse.bsky.social
#WOHD26 #WOHD2026
Did you tune in to #Haemcast's 'Veins, verse and voices'? Chair of Local families with bleeding disorders, Lisa Steadman, explains more about the poems collected in Bleeding and Belonging, on our blog: https://loom.ly/8ZBL_9s
#LFWBD #bleedingdisorders #families #poetry #podcast
#HemeSky #MedSky
🤝Today's #EHCRoundTable sent a clear message: patients with #ExtremelyRare #BleedingDisorders must not be left behind. Collaboration between patients, clinicians & policymakers is essential — and the work starts now.
🗣️ "Patient voices are central to improving care for #ExtremelyRare #BleedingDisorders. Lived experience should be brought to the centre of hospitals' work to shape better research priorities, healthcare policies & treatment pathways." — Marina Pimentel at the #EHCRoundTable
🔎 One of the biggest challenges highlighted today at the #EHCRoundTable: lack of data on #ExtremelyRare #BleedingDisorders. Improving registries, research collaboration & knowledge sharing will be key to advancing care.
🗣️ "Huge progress has been made in #BleedingDisorders, but patients with #ExtremelyRare conditions can still fall through the cracks. The therapeutic strategies to improve care exist — we just need to develop them." — Dr Cedric Hermans at the #EHCRoundTable
EHC European Rare & Inhibitor Network (#ERIN): improving knowledge, driving advocacy & empowering patients with #ExtremelyRare #BleedingDisorders to engage with policymakers. 🗣️Maja Sondergaard Knudsen on the network's mission at #EHCRoundTable.
🗣️ Dr Katharina Holstein at the #EHCRoundTable outlines key challenges in #ExtremelyRare #BleedingDisorders: heterogeneous bleeding phenotypes, lack of clinical trials & no established guidelines. More research and European collaboration are urgently needed.
@eahad.bsky.social
At #EHCRoundTable, Dr Maria Elisa Mancuso highlighted that diagnosing #ExtremelyRare inherited #BleedingDisorders demands expert physicians, specialised labs & multidisciplinary teams. Building expertise is essential for better patient care.
🗣️"No one left behind is not just a slogan for us. Patients with extremely rare #BleedingDisorders are still invisible in many EU countries — stark disparities persist, even within the same continent." — Tatjana Marković at the #EHCRoundTable
The conversation is about to start! 🇪🇺
We're live at the #EHCRoundTable on Unmet Needs in #ExtremelyRare #BleedingDisorders in Brussels. Experts, policymakers & patient voices united around one goal: ensuring no one is overlooked.
Follow this thread for live updates 👇🧵
Presenting the Bleeding Disorders: Care & Practice top 10 articles for February. Patient experience & quality of life continue to feature prominently.
Why not explore our archives here: https://loom.ly/uIXcNF8
#BDCP #bleedingdisorders #research #livedexperience #haemophilia
#HemeSky #MedSky
First full day of the 2026 Western States Regional Hemophilia Network annual meeting. Our collaboration with the providers at our hemophilia treatment centers is a critical partnership in ensuring all patients have access to quality, equitable and affordable health care.
#bleedingdisorders
The new season of #Haemcast has started! In episode 1, members of Local families with bleeding disorders discuss how poetry helped them explore their experiences, hopes, expectations and worries.
🎧 https://loom.ly/d6YUipg
#LFWBD #bleedingdisorders #families #poetry #podcast
#HemeSky #MedSky
❓#Ageing with #BleedingDisorders brings unique challenges. What worries you? Share your questions anonymously 👉 buff.ly/15hLxQi 🎯 We'll address them throughout our year-long project #LivingWellAgeingWell, check its resources: buff.ly/mB2IPh0
💜 These are real stories from women with #BleedingDisorders. 📣 This #IWD2026, we say: you can't treat what isn't diagnosed. 👉 Listen earlier. Test sooner.
@eupatientsforum.bsky.social @eahad.bsky.social @eurordis.bsky.social
On #InternationalWomensDay 2026, we want to give visibility and a voice to women and girls affected by a #BleedingDisorder. Read our #IWD blog here: https://loom.ly/lujMOIw
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
📣 On #IWD2026, we call for equitable recognition, diagnosis & care for women with #BleedingDisorders across Europe.🩸 Too many women wait years for a diagnosis. That must change. Read our full statement 👉 www.ehc.eu/awareness/in...
@tillymetz.bsky.social @stinebosse.bsky.social
Out today: the first new #Haemcast, in collaboration with Local families with bleeding disorders! Hear about the poetry workshops that helped #LFWBD members explore their experiences, hopes and fears:
🎧 https://loom.ly/d6YUipg
#bleedingdisorders #families #poetry #podcast
#HemeSky #MedSky
