On 4 to 7 February 2020, the European and international haemophilia community met in Den Haag, the Netherlands for the 2020 Congress of the European Association of Haemophilia and Allied Disorders (EAHAD).
The European Haemophilia Consortium (EHC) and EAHAD have had a longstanding working relationship defined by a Memorandum of Understanding (MoU), shared objectives – furthering haemophilia care in Europe – and common volunteers. In the past few years, the work of the EAHAD has grown. The association has strengthened its focus, through working groups, on several medical specialities part of the comprehensive care model in haemophilia, including psychosocial support, nursing, physiotherapy and women with bleeding disorders. Recently the EAHAD also launched a working group on gene therapy.
Focus on comprehensive care
This comprehensive care mindset was heavily reflected both in the programme and the audience, with many healthcare professionals other than haematologists attending the event. The conference began with a multidisciplinary day with sessions on nursing, physiotherapy and psychosocial support.
Olivia Romero-Lux, EHC Steering Committee member who attended the conference said: “For me, the culminating point of the congress was the multidisciplinary pre-conference day with the nursing session where two women with bleeding disorders gave the patients perspective. A first for me in my 20 years of volunteering!”
The event also comported several patient representatives as speakers and moderators sharing their personal experience and highlighting the impact of adequate care in their everyday lives.
Focus on other rare bleeding disorders
This congress edition was also very inclusive of other disorders such as issues faced by women with bleeding disorders and Von Willebrand Factor deficiencies. Declan Noone, EHC President, noted: ” I particularly enjoyed listening to Dr Michelle Lavin discussing issues related to low Von Willebrand Factor. This condition is different from Von Willebrand Disease. Both patients and clinicians need to be more aware of this particular condition. During her talk, Dr Lavin highlighted that current assessment tools might not provide an accurate description of the impact of bleeding in these individuals. This lack of adequate assessment is a very important point on which we need to reflect and take action.” During this session, Prof Frank Leebek discussed the challenges faced by people with VWD throughout their life-cycle, from newborns to elderly and how all of these challenges have unresolved issues that demand more research.
The first session of the first day was exclusively dedicated to women with bleeding disorders, and it featured beside the traditional medical experts, the views from a gynaecologist, a psychosexual therapist and a geneticist. This range of specialists highlighted that the comprehensive care needs of women differ from men and that haemophilia centres need to adapt their services to this patient population. Evelyn Grimberg, a member of the EHC Women and Bleeding Disorders Committee, said: “The session on women was very inspiring. I was happy to have a plenary session focusing exclusively on women with bleeding disorders. It was also wonderful to see such a wide range of medical specialists talking about the issues faced by women with bleeding disorders. Best of all, a patient was co-chairing the session, which I believe was a first for this congress.”
Manon Degenaar, a member of the Dutch Haemophilia Society and a Chair and speaker during the congress said: “I was touched and very surprised by all the reactions we, the patient representatives, received for our talks. It shows how important it is for patients to really share their stories not only within the community but especially with those who we are dependent on, in terms of care.” She added “The multidisciplinary session for women with bleeding disorders was excellent! We are so blessed with doctors that are passionately fighting for improvement of care for women.”
The EHC was also delighted to be able to screen its movie on ‘Women and Bleeding Disorders: Untold Stories’ twice during the congress. Our thanks go to the whole EAHAD team for making this possible.
However, the main focus of the congress remained novel technologies and in particular in haemophilia. Prof Peter Collins presented on the future therapeutic landscape in haemophilia. He also talked about the importance of joint protection and high trough levels. He noted that even with current trough levels, people with haemophilia still experience joint damage. We must consider higher trough levels to protect the joints of future generations. Prof Collins also highlighted that at the moment in the United Kingdom, children with moderate haemophilia had worse joint score than their severe counterparts. He pointed out that this is something to keep in mind when providing equity to patients. As we increase treatment levels for severe patients to ensure higher joint protection from bleeds and micro-bleeds, we should also keep in mind their moderate and mild counterparts with more severe bleeding phenotype.
New technologies also brought ethical questions as Olivia Romero-Lux pointed out: “The session on bioethics and gene therapy in children was really important. This topic is something that the community needs to focus on more and we, as EHC, should cover this topic during our October Round Table on gene therapy.”
Other highlights included the concept for gene therapy in Glanzmann Thrombasthenia. This project was the winner of the EAHAD 2020 Research Grant Award presented to Prof José Rivera from the University of Murcia, Spain. Amanda Bok, the EHC CEO, described this type of research like ‘water in the desert’ and Declan Noone added that ‘this is exactly the type of research we need to start having to ensure that other rare bleeding disorders are not left behind.’ The research grants also show the commitment of EAHAD to not only spread knowledge but provide resources to researchers who are working in less commercially-attractive areas. Former EHC President, Brian O’Mahony was also awarded a lifetime award and had the honour to give the Arosenius lecture in which he presented his view on the state of haemophilia care in Europe.
All in all, the event covered a variety of topics and also raised many questions on what more needs to be done in terms of research to best improve clinical practice for haemophilia and other rare bleeding disorders.
To get the full update on the EAHAD Congress, go to Twitter and consult #EAHAD2020. The next EAHAD Congress will take place in Manchester on 3-5 February 2021.