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Topic on Focus: Von Willebrand Disease (VWD) for patient organizations and healthcare professionals

ERN-EuroBloodNet "Topic on Focus: von Willebrand Disease (VWD) for patient organizations and healthcare professionals" is 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).

VWD is the most common bleeding disorder affecting up to 1% of the general population, however, VWD is often neglected and overshadowed by hemophilia. 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.

The launch of the program is timed to correspond with the European VWD Awareness Day, the 1st of February.

Webinars description

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 introduces the topic and shares 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. 

Program

  • VWD is not hemophilia

      Date: 1st of February 2024 

      Speakers: Prof Jeroen Eikenboom (Leiden University Medical Center, the Netherlands) and Baiba Ziemele (Latvia Hemophilia Society, EHC     VWD, WFH VWD, ERN-EuroBloodNet ePAG).

  • Genetics of VWD

       Date: 7th of March 2024

      Speakers: Prof Frank Leebeek (Erasmus MC: University Medical Center Rotterdam, the Netherlands) and Jo Traunter (EHC VWD)

  • Type doesn't define VWD symptoms

      Date: 28th of March 2024

      Speakers: Prof Riitta Lassilla (Helsinki University, Helsinki, Finland) and Hannah Yarnall (UK Haemophilia)

  • People with VWD bleed too

       Date: 9th of May 2024

      Speakers: Prof Michele Lavin (School of Pharmacy and Biomolecular Sciences (PBS) Dublin, Ireland)  and Prof Dearbhla Dohert (St. Vincent's University Hospital, Dublin, Ireland) and, Baiba Ziemele (Latvia Hemophilia Society, EHC VWD, WFH VWD, ERN-EuroBloodNet ePAG)

  • Do not let people bleed their way to treatment: accurately diagnosing VWD

      Date: 6th of June 2024 

      Speakers: Prof Susie Shapiro (Oxford University Hospital, Oxford, UK) Georgia Korosidou ( Greek Haemophilia Society) and Baiba Ziemele (Latvia Hemophilia Society, EHC VWD, WFH VWD, ERN-EuroBloodNet ePAG)

  • Treating VWD: what are the options

       Date: 11th July 2024 

      Speakers: Prof Sophie Susan (CHU de Lille, France) and Cathy Verbraeken (EHC VWD)

  • Surgery

      Date: 19th of September 2024 

      Speakers: Prof Flora Peyvandi (Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan, Italy) and Julia Rauscher (EHC VWD)

  • Women bleed too (menstruation, managing periods, impact, sex with VWD, etc.)

       Date: 17th of October 2024

      Speakers: Beatrice Nolan (Children's Health Ireland, Dublin, Ireland) and Jo Traunter (EHC VWD)  

  • Maternity

      Date: November 2024 (day to be confirmed)

      Speakers: Prof Karin van Galen (University Medical Center Utrecht, the Netherlands), Prof Rezan Abdul-Kadir (University College London, UK), Jo Traunter (EHC VWD)  and Debra Pollard (Advanced Nurse Practitioner, former Lead Nurse at the Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London, UK)

  • Ageing

       Date: 5th of December 2024

      Speakers: Prof Giancarlo Castaman (AOU Careggi, Florence, Italy),Nicolas Giraud (Association française des hémophiles) and Catherine Harrison (Haemophilia & Haemostasis Disorders at Sheffield Haemophilia & Thrombosis Centre)

  • VWD in the emergency room

      Date: 16th of January 2024 

      Speakers: Prof Flora Peyvandi (Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan, Italy) and Sunny Maini (UK Haemophilia Society).

  • Emotional trauma

       Date: February 2024 (day to be confirmed)

      Speakers: To be confirmed

  • Improve the quality of life for VWD patients

       Date: March 2025 (day to be confirmed)

      Speakers: To be confirmed

This program is accredited by the European Board of Accreditation (EBAH) in Hematology. Participants will receive 1 Continuing Medical Education points when they take part in one online webinar.

Past webinars

Upcoming webinars

Check below the upcoming webinars and register!

Genetics of VWD

07/03/2024 17:30
Speakers: Frank Leebeek, Jo Traunter
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

Type doesn’t define VWD symptoms

28/03/2024 17:30
Speakers: Riitta Lassilla, Hannah Yarnall
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

People with VWD bleed too

09/05/2024 17:30
Speakers: Michele Lavin, Dearbhla Dohert, Baiba Ziemele
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

Surgery

19/09/2024 17:30
Speakers: Flora Peyvandi, Julia Rauscher
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

Maternity

30/11/2024 17:30
Speakers: Karin van Galen, Rezan Abdul-Kadir, Jo Traunter, Debra Pollard
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

Ageing

05/12/2024 17:30
Speakers: Giancarlo Castaman, Nicolas Giraud, Catherine Harrison
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register

Emotional trauma

28/02/2025 17:30
Speaker: a:0:{}
Target: Health professionals, Patients organizations
Subnetworks: Bleeding - Coagulation disorders
Disease Groups: Von Willebrand disease
Register