Webinar #8 ERN-EuroBloodNet Topic on Focus on VWD : Beatrice Nolan (Children's Health Ireland, Dublin, Ireland), Cathy Verbraeken (Dutch Haemophilia Society, EHC VWD Committee), Natalie Lawson (Haemophilia Specialist Nurse, Birmingham Children's Hospital and Charity, and UK Haemophilia Society) and Prof Karin van Galen (University Medical Center Utrecht, the Netherlands).
ERN-EuroBloodNet "Topic on Focus: von Willebrand Disease (VWD) for patient organizations and healthcare professionals" has been coordinated by the ERN and the umbrella patient organization European Haemophilia Consortium (EHC) represented by the EHC VWD Committee and patient representatives (among which the ePAG Baiba Ziemele). This educational program is created in partnership with EURORDIS-Rare Diseases Europe and supported by members of the scientific committee: Prof Sophie Susen (CHU de Lille, France), Prof Jeroen Eikenboom (Leiden University Medical Center, the Netherlands), Prof Flora Peyvandi (Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan, Italy).
This program is aimed to distinguish VWD from hemophilia and focuses on the particularities of this bleeding disorder. The program also aims to discuss very topical areas related to VWD among patients and healthcare professionals in order to give visibility to the challenges of those living with this rare disease, including quality of life, access to treatments and care, medical services available in Europe, diagnosis and treatments options, and the overall patient journey through life. A further objective of this program is to disseminate up-to-date knowledge among interested hematologists, gynecologists, internists, pediatricians, nurses or other healthcare providers and patient organizations in the field of VWD. Ultimately, the aim of this approach is to support better patient care.
Each session is moderated by a duo of an expert physician or/and nurse, psychologist and a patient representative, who host the session together. The healthcare professional introduced the topic and shared clinical knowledge, the patient representative ensures that the information provided is contextualised and accessible to patients and their families. The program further also highlights the key crucial concepts, encouraging a dialogue from patients to the experts and seeking clarification of these for the webinar audience.
Organisers:
The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 47 national patient organisations for people with rare bleeding disorders located in the World Health Organisation (WHO) European region, including 27 Member States of the European Union and most Member States of the Council of Europe.
The EHC represents approximately 120,000 people diagnosed with rare bleeding conditions such as haemophilia, von Willebrand Disease (VWD), and other extremely rare bleeding disorders across Europe. However, experts estimate that many more live with an undiagnosed rare bleeding disorder.
ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States and covers Rare Hematological Diseases (RHD). Please visit the EuroBloodNet’s website to explore different initiatives we work on and how we can support patients and health professionals in the field of (RHD). [ Ссылка ]
The content of the ERN-EuroBloodNet’s YouTube channel is carried out within the framework of European Reference Network on Rare Haematological Diseases (ERN-EuroBloodNet)-Project ID No 101085717. ERN-EuroBloodNet is partly co-funded by the European Union within the framework of the Fourth EU Health Programme.
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
