HaemophAmicus

Haemophilia and Allied Disorders
Slovenia/Europe
🇸🇮➡️🇪🇺➡️🌎

[HaemophAmicus @HaemophAmicus]

Za tiste, ki se včeraj niste uspeli udeležiti predavanja o hemofiliji in visokem krvnem tlaku, ...
https://t.co/VG60zrkZsW
Hvala vsem za sodelovanje, pomoč in podporo.
#HaemophAmicus #hemofilija #motnjestrjevanjakrvi #krvnitlak #srceinožilje @ukclj @UKCMaribor @NIJZ_pr

[flora peyvandi @flora_peyvandi]

Safety of von Willebrand factor substitution for #neuraxial anesthesia in women with persistent #von Willebrand deficiency at delivery - Research and Practice in Thrombosis and Haemostasis https://t.co/3NLJiPEBap

[EHC_Haemophilia @EHC_Haemophilia]

Living with #VonWillebrandDisease? Our #PatientSurvey is still open until 7 September 2026! Help improve care & access across Europe 🌍 13 languages available 👉 https://t.co/XXNUqhG5YF

[URI Soča @uri_soca]

Danes obeležujemo Svetovni dan ozaveščanja o nasilju nad starejšimi

Nasilje nad starejšimi ni vedno vidno. Lahko se kaže kot žaljive besede, poniževanje, omejevanje svobode, finančno izkoriščanje ali celo zanemarjanje osnovnih potreb, kot so hrana, zdravila in ustrezna oskrba.
Posebej zaskrbljujoče je, da nasilje nad starejšimi najpogosteje izvajajo osebe, ki jim zaupajo – družinski člani, partnerji ali skrbniki.

Mnogi primeri ostanejo neprijavljeni. Starejši pogosto molčijo zaradi strahu, sramu ali skrbi, da bi izgubili podporo, ki jo potrebujejo. Zato je odgovornost vseh nas, da prepoznamo znake nasilja, o njem spregovorimo in ustvarjamo okolje, v katerem bodo starejši varni, spoštovani in slišani.
Vsak človek si zasluži dostojanstveno starost.

Ob današnjem dnevu pozivamo k večji občutljivosti, spoštovanju in ničelni toleranci do vseh oblik nasilja nad starejšimi.

Starost ne sme pomeniti večje ranljivosti, temveč več spoštovanja. Poskrbimo, da bodo naši starejši živeli varno, dostojanstveno in brez strahu.

[haemnet @haemnet]

Just under a month to go until #ISTH2026! As well as showing posters from studies on patient experiences in #Haemophilia and #GlanzmannThrombasthenia, we're looking forward to hearing about the latest cutting edge science and emerging advances in #BleedingDisorders care.

#ISTHCongress

[WFH @wfhemophilia]

At the Rotary International Convention, WFH is connecting with Rotary leaders and members from around the world to explore ways to improve diagnosis, education, and access to care for people with bleeding disorders.
#Rotary26 #RotaryInternational #HealthEquity #BleedingDisorders

[EAHAD @EAHADnews]

Last few hours to register for our upcoming webinar on Inhibitor Development in Gene Therapy for Haemophilia ⏳ Join Yesim Dargaud, Davide Matino, Sébastien Lacroix-Desmazes, and Guy Young as they explore emerging insights in the field 🧬 Register now: https://t.co/I2c9Q5GfC3

[WFH @wfhemophilia]

In partnership with the St. George Sunrise Rotary Club, the WFH is proud to take part in the 2026 Rotary International Convention in #Taipei

We look forward to connecting with Rotarians to raise awareness of #BleedingDisorders.

Visit us in the House of Friendship. #Rotary26

[EAHAD @EAHADnews]

Replay the Novo Nordisk symposium on Refocusing on haemophilia B: Patient-centric approaches to using anti-TFPI at EAHAD 2026 on the EAHAD Academy! 🎥Featuring insights from Jerzy Windyga, Brian O’Mahony and Ana Boban, the symposium explores the evolving landscape of haemophilia B management, from daily clinical and life challenges to the emerging role of anti-TFPI therapies and their application in real-world scenarios. 🔗 https://t.co/j6mFtHzNeD

[National Organization for Rare Disorders (NORD) @RareDiseases]

Do you have questions about participating in #RareDisease clinical trials as a patient or caregiver? Join our webinar tomorrow at 2pm ET for answers.

RSVP now and submit your #ClinicalTrial questions: https://t.co/uHrsw7dWGR

Sponsored by @AlexionPharma

[ERDERA @ERDERA_org]

🚀 Want to lead the way in #RareDisease research?
Subscribe to #ERDERA’s newsletter! 📩
✅ Big news first
✅ Expert tips & tools
✅ Breakthroughs that matter
✅ Community highlights
Subscribe at 👉 https://t.co/Tm1ojYJT86

[EURORDIS-Rare Diseases Europe @eurordis]

⏰ Only 8 days left!

What do 10,700+ people living with rare and undiagnosed conditions tell us about mental health and wellbeing?

Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change.

👉 https://t.co/jE089O77O1

[EAHAD @EAHADnews]

🎥 Watch the new e-learning module featuring Raj S. Kasthuri on Hereditary Hemorrhagic Telangiectasia (HHT) to review the genetic basis, pathophysiology, clinical manifestations, diagnostic criteria, and current management strategies for HHT: https://t.co/MPxJKF9sRU

[WFH @wfhemophilia]

🔍 Getting the diagnosis right is critical. This article reviews best practices for diagnosing von Willebrand disease, helping improve accuracy, classification, and long-term management. Read the overview: https://t.co/raXLo5fxci

[World Hepatitis Alliance @Hep_Alliance]

#WorldHepatitisDay website is now live!

Visit https://t.co/dO7DDNIKXV to access campaign resources or use our customisable poster and social media graphic tools to create materials in your own language.

Missed our campaign briefing? Watch the recording to learn more about this year's campaign and how you can take action: https://t.co/IBjdRKsMS2

[ERDERA @ERDERA_org]

How do we move from rare disease dialogue to real EU action? 🤔
At #ECRD2026, the community pushed for a stronger, coordinated response, with the upcoming European Blueprint at its core.
👉 Find out more about the key reflections from the event: https://t.co/SQyuX1Scuw

[EHC_Haemophilia @EHC_Haemophilia]

📢 Register for the EHC #HealthEconomics Course 2026! 🗓 15 Sept – 23 Oct 2026 🎓️ Learn about #HTA, cost-effectiveness & procurement in #BleedingDisorders. ⏰ Deadline: 14 Sept 2026 👉 Register now: https://t.co/7MZNziXkyP

[EAHAD @EAHADnews]

The Request for Proposals to host the Annual EAHAD Congress 2030 is now open! This is your chance to put your city in the spotlight and help advance care for patients across Europe. 🌍 Visit the EAHAD website for submission guidelines: https://t.co/rtuualO0xM

[WFH @wfhemophilia]

#DidYouKnow: Only about 1 in 10,000 people is born with hemophilia A. About 1 in 50,000 people is born with hemophilia B. Learn more about #hemophilia including symptoms, diagnosis, and treatment on the WFH eLearning Platform: https://t.co/nea7xBmFqF

[Hemostasis Today @HemostasisToday]

@EHC_Haemophilia - New Evidence Highlights the Urgent Need for Gender-Inclusive Bleeding Disorders Research

https://t.co/zoHN0U0Tip

#HemostasisToday

[Slovensko društvo za celiakijo (SDC) @SLO_Celiakija]

SDC sodeluje tudi pri akciji @ZvezaPacientov in SPAR Slovenija za zdravje – Celje

🔗 https://t.co/DRkGywOlAM

#slovenskodrustvozaceliakijo #SDC #celiakija #aoecs #together4coeliacs #aoecsglutenfreealliance #glutenfreealliance #sloveniancoeliacs #sloveniancoeliacsociety