Author Archives: Angelos Athanasopoulos

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EAHAD-CFVD Working Group new publication and online survey

By Emeritus Prof. Christopher Ludlam and Prof. John McVey, EAHAD-DB Coagulation Factor Variant Database Steering Group

 

Last year the databases moved to new locations and we would urge all users to bookmark the new sites especially if they access them directly. The databases are available from the EAHAD Coagulation Factor Database home page (dbs.eahad.org) or directly using the links in the table below.

 

If you find the databases useful you may be interested in our recent publication “The European Association for Haemophilia and Allied Disorders (EAHAD) Coagulation Factor Variant Databases: Important resources for haemostasis clinicians and researchers”* describing the databases. We kindly ask that you cite this when referring to the databases in future publications. We always welcome any comments and feedback to db-admin@eahad.org.

 

We would also encourage you to complete a short user survey, which can be accessed here. Regarding the databases, there are significantly more cases reported. However, we would encourage researchers and clinicians to continue to contribute to the project by submitting their variant data to the relevant databases via the submission forms on project home page.

 

DatabaseURLIndividual casesUnique variants
F7f7-db.eahad.org728221
F8f8-db.eahad.org101443052
F9f9-db.eahad.org4713 1244
VWFvwf-db.eahad.org1437708

 

*McVey, J. H., Rallapalli, P. M., Kemball-Cook, G., Hampshire, D. J., Giansily-Blaizot, M., Gomez, K., Perkins, S. J., Ludlam C. A. (2020) The European Association for Haemophilia and Allied Disorders (EAHAD) Coagulation Factor Variant Databases: Important resources for haemostasis clinicians and researchers. Haemophilia 26, 306-313.

EAHAD 2020 – Testimonials from our members

From 4 to 7 February, the EAHAD 2020 Congress took place in The Hague, Netherlands, with “A Golden Age of Treatment Choice” as its theme. More than 2300 delegates gathered at the World Forum for innovative discussions on the latest developments in the haemophilia and bleeding disorders field.

 

We asked some prominent members of the EAHAD community to share their feedback on our 13th Annual Congress.

 

In 2020, as well as in previous years, the EAHAD congress really met my expectations. It was a well organised event, where I was able to meet with colleagues I already knew, make new connections, as well as push forward current projects and improve existing liaisons.
I learned a lot and found that the information shared was important for the community. As I am a big fan of personalised medicine, I really liked the debate focused on pharmacokinetics-based prophylaxis. New treatments were also discussed, and the voice of patients was heard, something that – at least for me – is very important for my clinical work.
I enjoy that there is a dedicated “industry symposia day“ followed by the main scientific program. I believe, that this setup, together with the fact that there is no exhibition and no parallel sessions, make the EAHAD Congress unique and interesting for all who came, because it means that we can focus on sharing the information, learning and networking. For me, The Hague Congress was another successful and great scientific event. I am looking forward to the next one in Manchester.
 

Dr Jan Blatný
EAHAD Treasurer

 
The Congress was successful and well organized, both logistically and in terms of its content. The theme of “A Golden Age of Treatment Choice” was well reflected throughout the program. Congratulations to Prof. Dr Karin Fijnvandraat, the president of this year’s EAHAD Congress as well as the organising committee. I really enjoyed the Arosenius lecture given by Brian O’Mahony. The award was founded by Swedish haemophilia society in 1996 and is named after the Swedish artist, painter and writer Ivar Arosenius (1878- 1909) who himself had severe haemophilia and died of a major bleed at a young age. Listening to Brian’s speech, “Haemophilia care in Europe” and looking back to the journey that haemophilia societies, health care professionals and researchers have made is incredible. I am pretty sure that Ivar Arosenius would have been particularly pleased with the choice of this year’s lecturer.
 

Dr Fariba Baghaei
EAHAD Executive Committee member

 
It was great to be a part of the EAHAD Congress in The Hague. How much it had grown over the years and how much it is appreciated among the medical community… EAHAD is probably the best haemophilia congress in the world.
 

Dr Ana Boban
EAHAD Executive Committee member

 
EAHAD is such a wonderful friendly community, and EAHAD 2020 was a fantastic Congress in such a cool city; bikes, trams, beach, city – and it was all so chilled. I really enjoyed the physiotherapy pre-congress day – presentations focusing on evidence-based care were a feature and it was great to hear so many physiotherapists undertaking high quality novel and original research.
 

Dr David Stephensen
EAHAD Physiotherapists Committee Chair

 
This year’s EAHAD provided a unique opportunity to highlight psychosocial topics. It was our fourth Pre-Congress day and attendance was the highest so far. Along with two invited speakers, experts in the field of trauma treatment (Drs Carlijn de Roos) and psychosexual functioning (Prof. Dr Ellen Laan), we welcomed many psychologists and social workers, but also nurses and physiotherapists who were interested in expanding their knowledge. The multi-disciplinary session, as part of the main program, included psychosocial topics as well. It underscored the importance of psychosocial support for women. Personally, it was even more special, as we won a poster prize for promising new questionnaires measuring psychosocial outcomes (PROMIS). We are happy to look back on a highly successful conference and are very much looking forward to next meeting for which we intend to put together an even more interesting psychosocial program.
 

Dr Lotte Haverman
EAHAD Psychosocial Working Group Chair

 
I was really happy with this year‘s Pre-Congress Day, the last one I was actively involved in before stepping down from the EAHAD Physiotherapists Committee. Many of our Physiotherapists Network coordinators attended, representing hundreds of physios across Europe.
The level of the physiotherapy presentations on recent research was very high. We hope to soon be able to implement recent developments into the work of our network.
I am happy with how we made ourselves visible and showed the value of physiotherapy, especially to haematologists, but also to other allied health professionals, as well as persons with haemophilia.

 

Piet De Kleijn
2019 EAHAD Recognition Award Recipient, Physiotherapist

Interview with David Stephensen, new Physio Committee Chair

This past February, Dr David Stephensen became the new Physiotherapists Committee Chair, taking over from Dr Sébastien Lobet. We recently had the opportunity to talk with Dr Stephensen and asked him among other things about his background, his motivation in helping establish the committee, his plans for the future, as well as the challenges associated with physiotherapy in haemophilia and bleeding disorders in Europe.

 

read more…

Interview with Mary Kavanagh, new Nurses Committee Chair

This past February, Mary Kavanagh (Children’s Health Ireland hospital in Crumlin) became our new Nurses Committee Chair, taking over from Elsbeth Müller-Kägi. We recently had the opportunity to talk with Ms Kavanagh about her background, her plans for the future, as well as the challenges associated with nursing care in haemophilia and bleeding disorders in Europe.

 

read more…

Welcome to two new Nurses Committee members

In December 2019, the EAHAD Nurses Committee launched a call for applications for two new members. After carefully looking into all applications, the Committee chose Linda Myrin Westesson, from Sweden, and Greta Mulders, from The Netherlands, to join the existing members of the group.read more…

Press Release: EAHAD 2020 Congress

From 4 to 7 February, the EAHAD 2020 Congress took place in The Hague, Netherlands. The theme of this year’s Congress was “A Golden Age of Treatment Choice” and, indeed, more than 2300 delegates experienced diverse sessions and presentations of the highest caliber. The 13th Annual Congress took place at the World Forum, under the direction of Congress President, Prof. Dr. Karin Fijn van Draat and was the place to be for innovative discussions on the latest developments in the haemophilia and bleeding disorders field.read more…

In Memoriam – Axel Seuser, MD

It is with profound grief that the European Association for Haemophilia and Allied Disorders informs that Axel Seuser, MD, passed away on Tuesday 4 February, during the EAHAD 2020 Congress in The Hague.read more…

EAHAD Gene Therapy Working Group launches

EAHAD is pleased to announce the formation of a Working Group on Gene Therapy, following the approval of a proposal to the Executive Committee in September. Chaired by Prof. Dr Wolfgang Miesbach, the Working Group will have a mandate of two years and will be comprised of six to eight members. A patient representative will also be invited to take part.read more…

Access the EAHAD Factor VII Gene (F7) Variant Database

By Emeritus Prof. Christopher Ludlam and Prof. John McVey, EAHAD-DB Coagulation Factor Variant Database Steering Group

 

The updated EAHAD Factor VII Gene (F7) Variant Database is now available at www.f7-db.eahad.org

 

The database now includes 221 unique variants, representing gene variants identified in 728 individuals. read more…

EAHAD 2020: Just 2 months away!

EAHAD 2020 is taking place from 4-7 February under the direction of Congress President, Prof. Dr. Karin Fijn van Draat. The theme of this year’s Congress is “A Golden Age of Treatment Choice”.read more…