Continuing their pursuit of building a community of psychologists and social workers involved in the bleeding disorders field in Europe, the EAHAD Psychosocial Professionals Working Group will dedicate the third and final part of their EAHAD 2020 Pre-Congress Day Programme to a brainstorming session on building a network of European peers and colleagues.
The EAHAD 2020 Annual Congress will take place in The Hague, Netherlands, from 5 to 7 February 2020 at the World Forum congress centre.
Congress President Prof. Karin Fijn van Draat, with the support of the Congress Organising Committee, has put together an insightful programme, full of interesting sessions on the most pressing issues in haemophilia and bleeding disorders care today. With the theme “A Golden Age for Treatment Choice”, the programme pays homage to Dutch history and the legacy of 17th century art on display in The Hague, while highlighting the exciting period we find ourselves in in terms of haemophilia treatment and the many considerations that clinicians and patients must take into account.
By Christopher Ludlam, Chairman, and Geoffrey Kemball-Cook, Secretary, EAHAD-DB Coagulation Factor Variant Database Steering Group
The EAHAD Coagulation Factor Databases have recently been enhanced with new features and a greatly increased number of listed variants. The databases are now hosted at a new address http://dbs.eahad.org and you are encouraged to visit the site and review the variant lists, clinical information, and a host of additional information about the individual clotting factors, including comprehensive references and graphic display on molecular models of the site of variants.
In April 2019, the EAHAD Physiotherapists Committee launched a call for applications for two new members. The number and quality of the applications received was high and, after careful consideration, the Committee chose Magnus Aspdahl, from Sweden, and Nathalie Grinda, from France, to join the existing members of the group.
We were saddened to hear of the passing of Professor Jørgen Ingerslev earlier this month.
Prof. Ingerslev was a world leading specialist in the haemophilia and bleeding disorders field. Recognised for his knowledge and dedication to his profession, he had an extensive output of research publications and was a frequent speaker at conferences and symposia around the world.
The European Haemophilia Consortium’s (EHC) inaugural Conference on Women and Bleeding Disorders took place in Frankfurt, Germany, from Friday 24 to Sunday 26 May. It brought together close to 150 delegates, including patient representatives from around 30 countries.
The 2020 EAHAD Research Grant call for applications is now open. The application cycle runs from July to October of each year and the winner is announced at the annual EAHAD Congress in February.
EUHASS is a pharmacovigilance programme monitoring the safety of treatments for people with inherited bleeding disorders in Europe. Haemophilia treatment centres report adverse events directly to the EUHASS website where a live tally of reported events can be viewed. Quarterly and yearly surveillance reports are produced and made available to participating centres and product manufacturers, whilst product-specific reports are only shared with regulators and product manufacturers.
Following a unanimous decision on Thursday 7 February 2019 at the Annual General Meeting, EAHAD officially transferred its legal base from the United Kingdom to Belgium. Therefore, EAHAD is now an international non-profit association (AISBL) under Belgian law.
At the EAHAD 2019 Congress, in Prague, Czech Republic, we honoured two professionals for their work for and service to the haemophilia and allied disorders community in Europe and around the world, with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the two recipients is Prof Edward Tuddenham, leading haematologist from the Royal Free Hospital in London. We took the opportunity to interview Prof Tuddenham on his beginnings, his thoughts on the shape of the haemophilia field today, as well as his future plans.