EAHAD is pleased to announce the formation of a Working Group on Women and Bleeding Disorders, following the approval of a proposal to the Executive Committee in September. The Working Group’s mandate will last two years with its official first meeting set to take place during the 2019 EAHAD Congress in Prague.
EAHAD is delighted to announce the launch of a Working Group for Psychosocial Professionals, following the approval of a proposal to the Executive Committee in September.
EUHASS is an adverse event reporting system for European patients with inherited bleeding disorders carrying out on-going surveillance since October 2008. This November, the 9th Annual Report was published including data from the project start date up to 31 December 2017.
From 5 to 7 October 2018, EAHAD attended the 31st European Haemophilia Consortium Conference. Taking place in Brussels, the 2018 EHC conference was co-hosted by the Society of Patients with Haemophilia in Azerbaijan and offered a programme full of interesting and comprehensive sessions, that touched on many aspects of importance to the haemophilia community. In fact, the meeting already started a day early with a bike ride from Leuven to Brussels that helped raise awareness and promote the importance of physical activity.
We are excited to announce that our 2019 Congress will feature an interactive half-day workshop for Young Investigators on 5 February on the topics of:
1. Finding the answer to your question – a workshop on study design
2. How to write and publish your research
Research projects have the aim to answer questions that are vital for medical progress. To perform a successful research project, it is essential to formulate the right research question and to use the right design for the study. Once the study is completed, it is paramount to share your results by getting them published.
The aim of this Young Investigator Workshop is to teach clinical and translational researchers:
Dr Jan Blatny is not only a member of the EAHAD Executive Committee, but also the President of the EAHAD 2019 Congress in Prague, taking place from 6 to 8 February 2019. In the lead up to the Prague meeting, we had the opportunity to talk with Dr Blatny. We asked him among other things to shed some light on his background, the highlights and challenges associated with his work as Congress President, as well as his perspective on the future of haemophilia and allied disorders in Europe.
EAHAD is inviting haemophilia nurses to apply for two vacant posts on its Nurses Committee.
To apply to join the Nurses Committee, please send a short letter of motivation (maximum 300 words) outlining why you wish to be a part of the committee. Please also include in the letter the following information:
The Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, under the direction of Prof Flora Peyvandi, developed an interactive online registry, accessible to doctors and patients through a free smartphone app and web portal. Called mAPPHemo, the application allows for data collection on post-marketing surveillance of new haemophilia drugs.
By Christopher Ludlam, Chairman, Steering Group
The EAHAD databases of genetic variants in clotting factors VII, VIII, IX and VWF continue to be very popular with clinicians and researchers from around the world. Our curators strive to keep the records up to date and to provide detailed, additional clinical information about, for example, the presence of inhibitors. The provision of molecular models revealing the site of variation is particularly useful, as demonstrated in the figure below.
Are you a member of the EAHAD community? If yes, then you need to check out the newly launched EAHAD Membership website. By logging in with your individual username and password, you will have at your fingertips answers to all your questions like: