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
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).
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: 4th of April 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)
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)
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)
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).
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.
