Implementing Public Health Policy to Improve Bleeding Disorder Management Feasible in Less-Resourced Countries Real-world data from Brazil demonstrate it is feasible to implement a public health policy that improves the management of IBDs in less-resourced countries.

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

#WOHD26 #WOHD2026 #WorldOralHealthDay #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

#WOHD26 #WOHD2026 #WorldOralHealthDay #BleedingDisorders

@stinebosse.bsky.social

🦷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

#FactorXDeficiency #ExtremelyRare #ERIN #BleedingDisorders

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

Excited to share updates from IAHAD!

National Haemostasis Update (NHU) 2026
Aug 1–2, 2026, Bengaluru

A key scientific platform for haemostasis & bleeding disorders.

HTCs & institutions can join IAHAD
Details: pm@iahad.org
| www.iahad.org

#NHU2026 #HaemophiliaCare #BleedingDisorders #HTC

Join the 19th MSK Webinar by IAHAD on 13 March 2026 | 6:30–8:00 PM IST

Physical Therapy for Haemophilic Ankle Arthropathy
Speaker: Sandeep Kumar
Case: Carolin Singh
Moderator: Rohini Dange

Register: miceideas.org/webinar/regi...

#Haemophilia #MSKHealth #Physiotherapy #BleedingDisorders

The new season of #Haemcast is about to launch! We'll be exploring the ups, downs, ins and outs of family life with a rare bleeding disorder in collaboration with Local families with bleeding disorders.
https://loom.ly/ADEZ6qQ

#podcast #LFWBD #bleedingdisorders #families
#HemeSky #MedSky

📣Today, we mark #RareDiseaseDay with the global community 🌍 For those living with #ExtremelyRare #BleedingDisorders, the path to diagnosis & care is rarely easy. #ERIN exists to connect, amplify, and stand beside you — because your voice matters. 💚 @rarediseaseday.bsky.social

On #RareDiseaseDay 2026, we're shining a light on #UltraRare #BleedingDisorders — factor deficiencies, #GlanzmannThrombasthenia, #BernardSoulierSyndrom, #Afibrinogenemia... Our #RDD blog highlights the experience of Helen, who lives with #FactorV deficiency: https://loom.ly/hcPNBXE

#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