ERN-EuroBloodNet
 
Newsletter - New ERN-EuroBloodNet Topic on Focus: von Willebrand Disease (VWD) for patient organizations and healthcare professionals will start soon!
 

Keep informed about the latest information on Rare Hematological Diseases!

 
 
NEWS
 
 
 
13 webinars focusing on von Willebrand Disease and lead by global experts are about to start!
 
 

The ERN-EuroBloodNet and the umbrella patient organization European Haemophilia Consortium (EHC) are launching a new educational program targeting patients organizations and health professionals on von Willebrand Disease (VWD).

This educational initiative addresses the prevalent but often overlooked bleeding disorder, VWD, which affects approximately 1% of the general population. Despite its common occurrence, VWD is frequently overshadowed by hemophilia.

The launch of the VWD program is timed to correspond with the European von Willebrand Disease Awareness Day, the 1st of February!  

The primary goal of this program is to differentiate VWD from hemophilia, emphasizing the unique aspects of this bleeding disorder. Additionally, the program seeks to explore key areas relevant to VWD, addressing the challenges faced by individuals with this rare disease, such as quality of life, access to treatments, medical services in Europe, diagnosis and treatment options, and the overall patient journey. Another objective is to disseminate current knowledge to interested healthcare professionals, including hematologists, gynecologists, internists, pediatricians, nurses, and patient organizations specializing in VWD. Ultimately, this initiative aims to enhance patient care by fostering a better understanding of VWD.

PROGRAM DETAILS

  • 13 sessions, scheduled monthly on Thursdays from 5:30 pm to 7 pm (CET).
  • Each session includes a 35-minute presentation followed by a Q&A session.
  • Conducted via Zoom.
  • All sessions will be recorded and made available on the ERN-EuroBloodNet's website, EDU YouTube channel, and EHC platforms.
  • Moderated by a duo comprising an expert physician or nurse, psychologist, and a patient representative.
  • The program emphasizes key concepts, fostering a dialogue between patients to experts and encouraging audience engagement for clarification during the webinar.

 

Register to the program here!

 
 
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