HaemophAmicus

Za tiste, ki se včeraj niste uspeli udeležiti predavanja o hemofiliji in visokem krvnem tlaku, ... youtu.be/v2RGYKI5Wzk?li… Hvala vsem za sodelovanje, pomoč in podporo. #HaemophAmicus #hemofilija #motnjestrjevanjakrvi #krvnitlak #srceinožilje @ukclj @UKCMaribor @NIJZ_pr

🚐 The #EuropeanLiverScreeningTour 2026 is on the move across Europe — and Nicosia is next! 💚 FREE #LiverHealth Checks Across Europe 📍 Next Stop:Nicosia, Cyprus 🇨🇾🇪🇺🇺🇳 📅 9–11 May 2026 This is more than a tour — it’s a movement for prevention, early detection, and better liver health for every citizen. In Nicosia, ELPA is partnering with its member Prometheus, alongside communities, patient advocates, associations, clinicians, policymakers, and healthcare stakeholders to put liver health higher on the public agenda at a crucial moment for Europe — especially during Cyprus’ EU Presidency. More information will follow — stay tuned! Come and visit us. Get informed. Get inspired. Take action for your health. Because protecting liver health means protecting lives. Together, we are raising awareness and driving action to: • Treat #MASLD and #MASH • Cure #HepatitisC • Control, prevent and hope to treat #HepatitisB and #HepatitisD • Improve outcomes in #RareLiverDisease • Reduce the risks of #cancer, #stroke, #diabetes, and #cardiovascular complications A simple check can make a life-changing difference Awareness leads to action Prevention starts with one step Join us in Nicosia and be part of the change. #EuropeanLiverScreeningTour #LiverHealth #Prevention #ELPA #HealthForAll #Cyprus #Nicosia

🔬 Bridging the gap from diagnosis to treatment is key in rare disease care. This #ECRD2026 session will explore challenges and solutions, from genomics to AI - aiming for faster, more equitable access to treatment across Europe. 🔗 Learn more: go.eurordis.org/register-x

Through the WFH PACT Advocacy Academy, Minackshi Dhurmoo Luchmun helped bring hematology support to #Mauritius, strengthening care for people with #BleedingDisorders. Read more: bit.ly/4t3VuRr

@YeolyanCenter - WFH Humanitarian Aid Program Reflects on a Result of Years of Consistent Work with AHTA @wfhemophilia hemostasistoday.com/voices/yeolyan… #Hematology #Hemostasis #HemostasisNews #HemostasisToday #Medicine #Health #MedX #MedNews #MedEd

Europe has the tools to lead on rare diseases, but lacks alignment. Fragmented efforts still limit access for 30M people across Europe. A coordinated EU Action Plan could change that. 🔗 Read the full article written by Valentina Bottarelli: go.eurordis.org/Europeandrared…

🧬 Undiagnosed Day 2026 | Where diagnosis becomes hope | Day 2 From individual cases to the systems shaping diagnosis. Experts highlighted collaboration, data sharing and advanced diagnostics as key to improving access to answers. 👉 Read the full recap: loom.ly/k2ugfLw

A century of progress in VWD continues to shape how we diagnose, understand, and treat patients today. At #EAHAD2025 this session brought together leading experts to explore key advances across the full spectrum of VWD. 🎥 Relive the session: academy.eahad.org/eahad/2025/eah…🔓Free access

In people with #BleedingDisorders, the blood clotting process doesn’t work properly. As a result, they can bleed for longer than normal, and some may experience spontaneous bleeding into joints or other parts of their bodies. Learn more: bit.ly/3S3trkH

For years, Hassan lived with unexplained pain, until access to care in #Nigeria changed the course of his life. His story reflects the impact WFH national member organizations (NMOs) can have for people with #BleedingDisorders. Read his full story: bit.ly/42jevVr

onlinelibrary.wiley.com/doi/10.1111/ha… 📰 Check out the latest article on AAV-based gene therapy in haemophilia and its evolving role in clinical practice. A concise overview of clinical benefits alongside key challenges. Read the full article on the EAHAD's official Journal @haemophilia_jnl

#WorldHemophiliaDay 2026 was a global success! 🌍🩸 From 175+ monuments lighting up red to powerful community stories, this year highlighted why diagnosis is the first step to care. 🔗Read the full recap: bit.ly/3Qx4fpQ #WHD2026 #LightItUpRed #BleedingDisorders

@wfhemophilia - WFH Congress 2026 Participation Overview hemostasistoday.com/organizations/… #Hematology #Hemostasis #HemostasisNews #HemostasisToday #Medicine #Health #MedX #MedNews #MedEd #BleedingDisorders #Hemophilia #WFH #WFHCongress2026

Great news! 🎉 The WFH and WFH USA are pleased to announce that Roche has renewed its support for the WFH Humanitarian Aid Program through 2033, helping expand access to prophylactic treatment in countries where care remains limited. 🔗 bit.ly/3QnIRDo #TreatmentForAll

Si znate pravilno razkužiti roke? Pridite, vas bomo naučili. Ob mednarodnem dnevu higiene rok, 5. maja 2026, ste med 9.00 in 11.00 vabljeni v avlo šempetrske bolnišnice, kjer bomo prikazali pravilno razkuževanje rok. sbng.si/sl/aktualne-in…

⏳ Don’t miss our third webinar on #BleedingDisorders & #Ageing next week! Part of our #LivingWellAgeingWell series with @ERNEuroBloodNet 📅 27 April | 17:30–19:00 CEST 💬 Live Q&A 👇 Register now! community.ehc.eu/event/bleeding…

At the #EuropeanParliament, one message was clear: progress on #rarediseases exists, but inequalities persist. Patients must be at the centre of #policy. EURORDIS’ Blueprint will help drive action towards equitable access across Europe. 🔗 Read more: go.eurordis.org/europeanparlia…

Sosothikwl on use of low dose Emicizumab in Thailand. Used 2-2.5 mg/kg every 4 weeks ( full dose is 6 mg/kg/4 weeks) Decreased bleeds and improved target joints.

💻️ Who looks after the carers? ❤️ Join our #ThisWay webinar on 7 May with mental health nurse & carer Amy Owen-Wyard for advice on well-being & stress. 👉 community.ehc.eu/event/caring-f… #CarersSupport #BleedingDisorders

More than 1,900 participants from 130 countries united at #WFHCongress2026 in #KualaLumpur to advance care for people with #BleedingDisorder. 🔗Read more: bit.ly/4e1Oj8S Next stops: #wfhCCS in #Prague and #WFHCongress2028 in #Chicago.

Topics in the #BDCP top 10 articles for March include patient experiences of treatment, #haemophilia #genetherapy and quality of life. Explore the archives here: loom.ly/uIXcNF8 #bleedingdisorders #livedexperience