EHC is proud to announce the launch of its collaborative educational project together with the ERN-EuroBloodNet “Topic on Focus: von Willebrand Disease (VWD)” for patients, patient organisations, and healthcare professionals.
To register for the whole programme or selected webinars, please visit the ERN EuroBloodNet website.
To register for the webinar People with VWD bleed too on the 9th of May 2024, please use this link.
This project is coordinated by the ERN and the EHC represented by the EHC VWD Committee and VWD patient representatives. This educational programme 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), and 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 haemophilia. This programme aims to distinguish VWD from haemophilia and focuses on the particularities of this bleeding disorder. The programme also aims to discuss very topical areas related to VWD among patients and healthcare professionals 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 programme is to disseminate up-to-date knowledge among interested haematologists, gynaecologists, internists, paediatricians, nurses or other healthcare providers and patient organisations in the field of VWD. Ultimately, this approach aims to support better patient care.
This programme is accredited by the European Board of Accreditation in Hematology. Participants will receive 1 Continuing Medical Education points when they take part in one online webinar.
The launch of the program is timed to correspond with the European VWD Awareness Day, the 1st of February.
PROGRAMME
- 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
- Programme will be recorded and part of the ERN-EuroBloodNet’s website & EDU YouTube channel and the EHC platforms.
PROGRAMME
- VWD is not haemophilia, 1st of February 2024
- prof Jeroen Eikenboom (Leiden University Medical Center, the Netherlands), Baiba Ziemele (Latvia Hemophilia Society, EHC VWD Committee, WFH VWD Committee, ERN-EuroBloodNet ePAG).
- Genetics of VWD, 7th of March 2024
- prof Frank Leebeek (Erasmus MC: University Medical Center Rotterdam, the Netherlands) and Jo Traunter (EHC VWD Committee Co-chair).
- Type doesn’t define VWD symptoms, 4th of April 2024
- prof Riitta Lassila (Professor of Coagulation Medicine, University of Helsinki, Finland, Coagulation disorders, Hematology, Comprehensive Cancer Center, Helsinki University Central Hospital, Helsinki, Finland) and Hannah Yarnal (UK Haemophilia Society).
- People with VWD bleed too, 9th of May 2024
- prof Michele Lavin (School of Pharmacy and Biomolecular Sciences (PBS) Dublin, Ireland) and prof Dearbhla Dohert (St. Vincent’s University Hospital, Dublin, Ireland), Baiba Ziemele (Latvia Hemophilia Society, EHC VWD, WFH VWD Committee, ERN-EuroBloodNet ePAG).
To register for this webinar, please follow this link.
- prof Michele Lavin (School of Pharmacy and Biomolecular Sciences (PBS) Dublin, Ireland) and prof Dearbhla Dohert (St. Vincent’s University Hospital, Dublin, Ireland), Baiba Ziemele (Latvia Hemophilia Society, EHC VWD, WFH VWD Committee, ERN-EuroBloodNet ePAG).
- Do not let people bleed their way to treatment: accurately diagnosing VWD, 6th of June 2024
- prof Susie Shapiro (Oxford University Hospital, Oxford, UK), Georgia Korosidou (Greek Haemophilia Society, Member of the Board) and Baiba Ziemele (Latvia Hemophilia Society, EHC VWD, WFH VWD, ERN-EuroBloodNet ePAG)
- Treating VWD: what are the options, 11th of July 2024
- prof Sophie Susan (CHU de Lille, France) and Cathy Verbraeken (EHC VWD Committee)
- Surgery, 19th September 2024
- prof Flora Peyvandi (Foundation IRCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy) and Julia Rauscher (EHC VWD Committee Co-chair)
- Women bleed too (menstruation, managing periods, impact, sex with VWD, etc.), 17th of October 2024
- Beatrice Nolan (Children’s Health Ireland, Dublin, Ireland) and Jo Traunter (EHC VWD Committee Co-chair)
- Maternity, 28th November 2024
- prof Karin van Galen (University Medical Center Utrecht, the Netherlands) and prof Rezan Abdul-Kadir (University College London, UK), Jo Traunter (EHC VWD Committee Co-chair), and Debra Pollard (Advanced Nurse Practitioner, former Lead Nurse at the Katharine Dormandy Haemophilia Centre, Royal Free Hospital, London, UK)
- Ageing, 5th of December 2024
- prof Giancarlo Castaman (AOU Careggi, Florence, Italy), Nicolas Giraud (Association française des hémophiles), and Cathy Harrison (Advanced Nurse Practitioner in Haemophilia & Haemostasis Disorders at Sheffield Haemophilia & Thrombosis Centre)
- VWD in the emergency room, 16th of January 2025
- Flora Peyvandi (Foundation IRCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy), and Sunny Maini (UK Haemophilia Society).
- Emotional trauma, February 2025 day and a clinician speaker to be confirmed, patient representative: Jo Traunter (EHC VWD Committee Co-chair)
- Improve the quality of life for VWD patients, 2oth of March 2025
- Dr Linda Myrin Westesson (Sahlgrenska University Hospital, Sweden), Cathy Verbraeken (EHC VWD Committee) and Annabel Kattai (EHC VWD Committee).
Please contact us for any questions at [email protected]
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
