The XXXVI WFH Congress took place on April 21-24, 2024, this time in Europe, in Madrid, Spain. Ines, Annabel and Martin from the Estonian Hemophilia Society were present.
The program of the World and European Hemophilia Conferences is extensive and lectures are held every day, which mostly coincide with their presentation times. So we decided to divide into three and attend the lectures that speak to us the most and that could benefit our society the most. This does not mean that we were in different lectures all the time, at some lectures all three of us ran into each other by chance.
Ines chose lectures whose main topics were co-morbidities, aging and pain in hemophilia. Martin went to hear about gene drugs and new drugs, some of which are already available to us and some of which will hopefully be added in the coming years. Annabel chose topics related to VWD and women's coping with various bleeding disorders.
The most basic message of gene therapy was that it is not a treatment that will completely cure you of hemophilia. Although various tests and studies of gene therapy have shown that it is an innovative and life-making medicine, it also has narrow points and many questions that still do not have answers and need to be answered.
You can read more about bleeding disorders, new drugs and gene therapy on the website of the World Federation of Hemophilia:
https://elearning.wfh.org/elearning-centres/hemophilia/
https://elearning.wfh.org/elearning-centres/von-willebrand-disease/
https://elearning.wfh.org/resource/gene-therapy-for-hemophilia-video/
https://www1.wfh.org/publications/files/pdf-2368.pdf
https://www1.wfh.org/publications/files/pdf-2369.pdf
Before gene therapy becomes AFFORDABLE and accessible to everyone, we can already use drugs that no longer require intravenous injection, but subcutaneous injection is sufficient. With this type of injection, it is no longer necessary to go to the hospital or learn how to inject into a vein, but only a small dose of the drug under the skin (very similar to insulin injection) is sufficient. In the case of hemophilia A, such a drug is already available in Estonia, but not yet in the case of hemophilia B. It is still in clinical trials and has shown good results so far. Such subcutaneous drugs are only for prophylactic treatment, and in the case of major injuries (before surgery, severe trauma, etc.) you still have to administer the drug by intravenous injection.
Thanks to Ines' quick response, we managed to present the rehabilitation program at the Kuressaare hospital at the WFH conference. For this purpose, we prepared a poster that was put up together with other posters at an exhibition where the visitors of the conference could visit and ask questions.
Among others, Prof. Berntrop and Bayer representative Kärt Tali visited and inquired about our poster. Prof. Berntrop has been to Tartu before.
Next to the exhibitions, different pharmaceutical manufacturers had set up their representative tables and corners where you could introduce yourself and make new contacts. In addition to our existing contacts and supporters, we went to the CSL Behring table with the desire to get to know the representative of the Baltic countries and to establish new contacts with them.
In addition to getting to know the representatives of the pharmaceutical manufacturers, we met the hemophilia patients we already knew from the Finnish, Swedish, and Danish associations and got to know a Finnish physiotherapist. Rehabilitation doctor Klaus Österholm, who visited us at the Värska 2017 Summer Seminar, welcomed all our EHU members.
There was also an extraordinary meeting of the EHC, which we also took part in.
