News: léčba

New Technologies in Treatment 2024

The first weekend of November is traditionally dedicated to a workshop on new technologies in treatment organized by the European Haemophilia Consortium (EHC).

Gene Therapy - A Practical Guide

We bring you a new publication—a translation of a practical guide on gene therapy published as part of the EHC’s editorial activities.

New Technologies in Treatment 2023

New developments in non-factor therapy, rebalancing therapy, gene therapy or artificial intelligence. These and other topics were discussed at the workshop on new technologies in the treatment of rare bleeding diseases, held in Lisbon, Portugal, November 3-5, 2023.

Advances in the Treatment of Hemophilia and von Willebrand Disease

From 11-13 November 2022, a workshop organized by the European Haemophilia Consortium took place in Marseille, France, focusing on new technologies in the treatment of hemophilia and other rare bleeding disorders. The Czech Hemophilia Society was represented on site by Vice-Chairman Martin Žídek and MUDr. Pavel Mazánek, who serves as Deputy Head of Haematology at the Department of Paediatric Haematology and Biochemistry at the University Hospital Brno.

Recommendations of the Czech National Hemophilia Program (CNHP) on Vaccination Against SARS-CoV-2

Recommendations on vaccination against SARS-CoV-2 (COVID-19) were published earlier this year in the journal Haemophilia, and a brief translation is available on our website at [this link](/novinky/prohlaseni-k-ockovani-proti-pandemii). The recommendations are endorsed by the World Federation of Hemophilia (WFH), the European Association for Haemophilia and Allied Disorders (EAHAD), the European Haemophilia Consortium (EHC), and the National Hemophilia Foundation of the United States (NHF). These recommendations, including their Czech translation, already contain all the essential information.

Statement on Pandemic Vaccination

Vaccination against COVID-19 is the most pressing topic of recent months. Statements have been issued by the World Federation of Hemophilia (WFH), the European Association for Haemophilia and Allied Disorders (EAHAD), the European Haemophilia Consortium (EHC), and the National Hemophilia Foundation of the United States (NHF). The statement applies to persons over 18 years of age; for younger individuals, we continue to monitor developments and studies.

It Is Important to Realise What Good the Current Situation Brings Me, Says Psychologist

The current situation is likely difficult for everyone, albeit for different people perhaps for different reasons. Individuals with serious chronic illnesses, including the bleeding disorder haemophilia, are often more afraid of contracting the new coronavirus than the general population. They may also experience anxiety regarding current changes in the health-economic system on which they are vitally dependent. How should one deal with fears and anxiety? How can one maintain optimism in the current circumstances while also keeping the routine and discipline essential for managing the disease? Clinical psychologist Mgr. Petra Bučková from Masaryk University and the University Hospital Brno answered these and many other questions.

Experts in Prague. Czech Republic Hosts the Congress of the European Association for Haemophilia and Allied Disorders (EAHAD)

In early February, the 12th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) is taking place in Prague, attended by some 2,500 experts from around the world. For the Czech Republic, this is a recognition and acknowledgement of the physicians, nurses, physiotherapists, psychologists, and all who care for and support people with blood clotting disorders. The congress was held under the patronage of Minister of Health Adam Vojtěch, who attended the opening press conference together with EAHAD President Professor Michael Makris, Congress President Jan Blatný, and the Chairman of our organisation Martin Bohůn.

What Is Being Discussed?

The European Haemophilia Consortium organised a workshop in Sofia on the topic of modern technologies and new therapies. The number of participants was limited, and the organisers placed great emphasis on questions from the audience, which consisted mainly of physicians and patient organisation representatives. The opening covered an overview of all ongoing clinical studies. Currently, several approaches to the treatment of hemophilia A and B exist.

Identification Items for People with Bleeding Disorders

One of the main tasks of the association was to develop standardized emergency medicine procedures for hemophilia and other bleeding disorders and proposals for corresponding identification items. We have fulfilled these requirements. The Czech Hemophilia Society and Hemojunior, in cooperation with the Emergency Medical Service, have prepared a set of special identification items for all individuals with blood clotting disorders that can save lives.

European Commission Approves Treatment for Hemophilia A with Inhibitors

Roche announced that the European Commission has approved the medicinal product Hemlibra for prophylaxis of bleeding episodes in people with hemophilia A with inhibitors. Approximately one in three people with severe hemophilia A develops antibodies against Factor VIII, causing replacement therapy to lose its effectiveness. This leads to a greater risk of life-threatening bleeds or recurrent bleeding episodes. People with hemophilia A and inhibitors face a 70% higher risk of death compared to those without inhibitors.

Viral Hepatitis C

A number of Society members are dealing with hepatitis C infection, whose treatment has been very problematic until now. But better times are ahead, and hope has emerged. We asked for expert information from Prof. MUDr. Petr Urbanek, CSc. from the Department of Internal Medicine, 1st Faculty of Medicine, Charles University and the Central Military Hospital in Prague, who has long been dedicated to the care of haemophilia patients. His text is rather difficult for laypeople, as is often the case with physicians, but it brings the most important message -- hepatitis C can now be successfully treated. Every haemophilia treatment centre has the details.

We Know Where to Seek Help

Regular readers of the Society's website and printed Newsletter already know. We have informed several times about the possibility of using home care agencies that can step in when someone is momentarily, or even permanently, unable to self-administer a factor concentrate and has no one around to help. In such cases, a visit from a qualified nurse is a true blessing. More detailed information can be found in this article, or in the information leaflet.

Read This

Nobody has doubted the usefulness and benefits of prophylaxis for a long time. However, not everyone knows exactly what this term means. That is why we are publishing an informational material from the World Federation of Hemophilia (WFH) that summarizes everything essential. You can read the text here on the website or download and print it.

The Pharmacokinetics Project Is Getting Underway

As we promised in the latest Newsletter, the Czech Hemophilia Society together with the Institute of Hematology and Blood Transfusion in Prague is launching the possibility of determining the survival and clearance curve of administered clotting factors in adults. Anyone who requests it in agreement with their center can sign up. Pharmacokinetic tests have been very popular worldwide recently, and for good reason. Every organism reacts differently to the administered factor, and the dosage and frequency are determined accordingly. According to research, almost nobody has their dosing right when following a standard regimen.

The Time Has Come for Greater Efficiency

The efficiency of treatment with concentrates, whether plasma-derived or recombinant. The demand for better use of products does not come from developing countries, but from developed ones. Even there, they recognise that the economics of treatment plays an important role and that with the same resources, a better outcome can ultimately be achieved. But it is not just about cost-effectiveness — it is also about greater comfort.

What Is Home Healthcare?

This is something we are not accustomed to in our country. Abroad, however, such a service has existed for a long time and has proven its worth. Now it is available to our members as well, who can make full use of it. More detailed information about a specific agency can be obtained through the Society. Not everyone is able to self-administer the necessary concentrate, or a temporary indisposition may prevent it. Or another intervention by a qualified nurse may be needed, such as a dressing change, a check-up, or help with rehabilitation. All of this at home, without having to travel to a healthcare facility. Just call and professional help will come to your door.

Why Not Take Advantage of the Opportunity?

Several months ago we drew attention to the possibility of setting up an account on the Czech National Hemophilia Programme registry. Although its advantages are obvious, so far only a very small number of clients have taken advantage of it. Why? Perhaps they are not properly informed, perhaps they were put off by the collapse of the similar IZIP system, or perhaps they are simply too comfortable. Yet it really only takes a few minutes of their time and the benefit is significant.

Try the Electronic Registration

For years we have been promising the possibility of electronic reporting of concentrate consumption and online access to basic data. It is finally here - you can try it out. The Institute of Biostatistics and Analyses in Brno has prepared a database that can be used jointly by haemophilia centres and their patients. Everyone needs to ask their centre to set up and provide access to the registry. The centre will enter all the data it normally keeps in the patient file. Most importantly, everyone will have access to their basic data anywhere in the world.

What Is Available — Updated September 20, 2016

The range of therapeutic concentrates available in our country is relatively wide; we bring you an overview. All listed products are registered in the Czech Republic and can be used; the only exception currently applies to the product Wilate. Photographs of packaging and contents may change over time; they reflect the state as of the date of publication. The same applies to package sizes.