European Hemophilia Consortium for NMO-s

This year, a conference of national hemophilia societies organized by the European Hemophilia Consortium took place. Which took place on June 15-18, 2023 at Penta Hotel, Brussels. Jo Kroll and Martin Kaal of the Estonian Hemophilia Association took part in this event.

The purpose of the EHC Leadership Conference is to provide time for our NPOs to discuss issues important to them and currently relevant to the bleeding disorders community, as well as to benefit from each other's strengths, experiences and best practices. Moreover, it is crucial to experience the learning process through activities, therefore relevant interactive and engaging elements have been added to the program.

The conference had a lot of group discussions on various topics, creating long-term cooperation relationships, various problems in NGOs (keeping volunteers, finding active members, involving young people in the activities of the association and independent activities of youth organizations).
In addition, they wanted to pay more attention to rare bleeding disorders other than hemophilia A, B and von Willebrand. For example, factor 5, 7, 10, 11, 13 deficiency, fibrinogen deficiency, platelet dysfunction, collagen vascular disorder, and Osler Rendu disorder.

A soon-to-be-completed short film about aging-related problems of people with bleeding disorders was also shown. Now that countries have gradually improved the availability of various medicines, the new main concern is not bleeding but the mental and physical condition of the person. In the past, the average life expectancy of hemophilia A and B was 20-30 years, but with the improvement of treatment, it has increased to 70 years. Elderly patients increasingly need the support of specialist doctors, be it physiotherapists, cardiologists, orthopedists and many others (~20 different specialties were presented in the short film). We also have to take into account those who have lost their partner and can no longer manage in their own home and have to go to a nursing home. Is this care service sufficient for a patient with hemophilia who has difficulty moving or injecting themselves. For them, it is a new environment and new people that he needs to learn to trust to inject himself.

Let's not forget an active lifestyle with a varied diet. Let's be healthy!

Material presented at the conference (in English):

  1. Program
  2. EHC Update – Focus Areas & New Faces
  3. Treatment and Access for all Bleeding Disorders – Prof Cedric Hermans
  4. Treatment and Access for all Bleeding Disorders – workshop
    1. Haemophilia A and B;
    2. Von Willebrand Disease;
    3. Women with Bleeding Disorders;
    4. Extremely Rare Bleeding Disorders & Inhibitors;
  5. Long Term Financial Sustainability – Luis Teixeira
  6. Patient advocacy revised – Naja Skouw-Rasmussen and Laura Savini
  7. Through shared experiences to better advocacy
  8. Sustainable relationships – internal
    1. Burnout Prevention - Svetoslava Stoyanova;
    2. Volunteer Management – Kristine and Fiona
  9. Input from the EHC Youth Workshop
    1. Youth Engagement – notes
  10. Takeaways
  11. Open microphone
  12. The French hemophilia society project – bicycle trip
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