About the Event
Speakers: Flora Peyvandi, Sunny Maini
Subnetworks: Bleeding – Coagulation disorders
Disease Groups: Von Willebrand disease
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
- 13 sessions, once per month on a Thursday, from 5.30 pm to 7 pm (CET).
- 35 min of presentation + 35 min for Q&A
- On Zoom
- The program will be recorded and part of the ERN-EuroBloodNet’s website & EDU YouTube channel and the EHC platforms.
Each session is moderated by a duo of an expert physician or/and nurse, a psychologist and a patient representative, who host the session together. The healthcare professional introduces the topic and shares clinical knowledge, and the patient representative ensures that the information provided is contextualised and accessible to patients and their families. The program further highlights the key crucial concepts, encouraging a dialogue between patients and the experts and seeking clarification 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 Committee, WFH VWD Committee, 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 (UK Haemophilia Society, EHC VWD Committee)
- Type doesn’t define VWD symptoms
Date: 4th of April 2024
Speakers: Prof Riitta Lassilla (Helsinki University, Helsinki, Finland) and Hannah Yarnall (UK Haemophilia Society)
- People with VWD bleed too
Date: 9th of May 2024
Speakers: Dr. Michelle Lavin (National Coagulation Centre, St. James’s Hospital, Dublin and Irish Centre for Vascular Biology, RCSI, Dublin, Ireland), Dr. Dearbhla Doherty (Irish Centre for Vascular Biology, RCSI, Dublin, Ireland) and, Baiba Ziemele (Latvia Hemophilia Society, EHC VWD Committee, WFH VWD Committee, 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 Jo Traunter (UK Haemophilia Society, EHC VWD Committee)
- Treating VWD: what are the options
Date: 11th July 2024
Speakers: Prof Sophie Susan (CHU de Lille, France) and Cathy Verbraeken (Dutch Haemophilia Society, EHC VWD Committee)
- Surgery
Date: 19th of September 2024
Speakers: Prof Flora Peyvandi (Foundation IRCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy) and Julia Rauscher (Austrian Haemophilia Society, EHC VWD Committee)
- 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), 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)
- Maternity
Date: 28th of November 2024
Speakers: Prof Karin van Galen (University Medical Center Utrecht, the Netherlands), Prof Rezan Abdul-Kadir (University College London, UK), Jo Traunter (UK Haemophilia Society, EHC VWD Committee) 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 (French Haemophilia Society) and Catherine Harrison (Haemophilia & Haemostasis Disorders at Sheffield Haemophilia & Thrombosis Centre)
- VWD in the emergency room
Date: 16th of January 2025
Speakers: Prof Flora Peyvandi (Foundation IRCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy) and Sunny Maini (patient advocate).
- Emotional trauma
Date: 13th of February 2025
Speakers: Dr Lotte Haverman (Emma Children’s Hospital of the Amsterdam UMC), Tessa van Gastel (Amsterdam UMC) and Jo Traunter (UK Haemophilia Society, EHC VWD Committee).
- Improve the quality of life for VWD patients
Date: 20th of March 2025
Speakers: Pr. Linda Myrin Westesson (University of Gothenburg, Sweden), Cathy Verbraeken (Dutch Haemophilia Society, EHC VWD Committee) and Annabel Kattai (patient advocate)
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.
