06/12/2017
Prague Was Honoured to Host a Symposium on Von Willebrand Disease
ČSH
Von Willebrand disease is the most common bleeding disorder, yet unlike hemophilia it is often overlooked and frequently diagnosed late and incorrectly. People around the world suffer from this disease, and representatives from around the world gathered in Prague on Friday 1 December and Saturday 2 December 2017 to exchange information and experiences, both professional and personal. The symposium was organized by the World Federation of Hemophilia (WFH), which, like other hemophilia organizations around the world, represents all patients with blood clotting disorders, and the pharmaceutical company SHIRE, which among other things develops therapeutic products for rare diseases, including von Willebrand disease.
During the two-day programme, physicians and representatives of patient organizations from various corners of the world alternated in giving presentations, including from Australia, Sudan, Lebanon, the USA, and Thailand.
The Czech Hemophilia Society, in cooperation with the WFH and Motol University Hospital, staffed the so-called treatment room, a space for the administration of therapeutic products. We would like to thank Veronika Čepeláková and Romana Půčková for their medical care at this event.
The Czech Hemophilia Society was represented by board member Martin Žídek, who held personal meetings with WFH representatives, during which the possibilities of greater involvement of the Society in WFH international activities were discussed.
From among the patients, a mother of a 12-year-old boy with this congenital disease, Mrs. Jana Racková, took the opportunity to talk about life with von Willebrand disease. Her enthusiasm about the event is evident from the following account:
On Friday 1 December 2017 and Saturday 2 December 2017, the 1st WORLDWIDE SYMPOSIUM on Von Willebrand Disease was held in Prague, under the auspices of the WFH and the company SHIRE. Representatives of 16 countries from around the world participated in the symposium. During the presentations, physicians, patients, representatives of organizations that bring together patients with vWD, and last but not least mothers of children with vWD took turns. Representatives of each country outlined in their presentation how their country addresses the correct and timely diagnosis of vWD, how patients reach them, and what they do to raise awareness of this disease in their country. The personal stories of patients who did not always learn about their diagnosis in time were very interesting and emotional. I had the opportunity to attend the entire symposium. As a mother of a boy with vWD, I must say that the entire conference was an enormous benefit for me. Meeting so many people connected by vWD from different corners of our planet and exchanging experiences and knowledge with them was of great value to me. We established mutual friendships and cooperation in raising awareness of vWD in our countries. Jana Racková - mother of a 12-year-old with vWD
It is important that similar events touch individuals personally, and thanks to such events, awareness and knowledge about specific diseases also increases. Newly established friendships and contacts are also a no less significant benefit. We look forward to similar events in the future and are glad that the Czech Hemophilia Society can be a part of them.
