EHC and ERN-EuroBloodNet “Topic on Focus: von Willebrand Disease (VWD)”

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. 

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
• The programme will be recorded and part of the ERN-EuroBloodNet’s website & EDU YouTube channel and the EHC platforms.

PROGRAMME

• VWD is not haemophilia, 1^st 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, 7^th 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, 4^th 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, 9^th 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).
• Do not let people bleed their way to treatment: accurately diagnosing VWD, 6^th of June 2024
  • prof Susie Shapiro (Oxford University Hospital, Oxford, UK), Georgia Korosidou (Greek Haemophilia Society, Member of the Board) and Jo Traunter (EHC VWD Committee Co-chair)
• Treating VWD: what are the options, 11^th 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, 17^th of October 2024
  • Beatrice Nolan (Children’s Health Ireland, Dublin, Ireland), Karin van Galen (University Medical Center Utrecht, the Netherlands), Natalie Lawson (Haemophilia Specialist Nurse, Birmingham Children’s Hospital), and Cathy Verbraeken (EHC VWD Committee)
    To register for this webinar, please follow this link. 
• 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, 16^th of January 2025
  • Flora Peyvandi (Foundation IRCCS Ca’Granda Ospedale Maggiore Policlinico, Milan, Italy), and Sunny Maini (UK Haemophilia Society).
• Emotional trauma, 13th February 2025
  Dr Lotte Haverman  head of the research group and a clinical pediatric psychologist of the psychosocial department at the Emma Children’s Hospital of the Amsterdam UMC) and Jo Traunter (EHC VWD Committee Co-chair)
• Improve the quality of life for VWD patients, 20th of March 2025
  • Dr Linda Myrin Westesson (Sahlgrenska University Hospital, Sweden), Cathy Verbraeken (EHC VWD Committee) and Annabel Kattai (Estonian Hemophilia Society)

Please contact us for any questions at [email protected].